Wednesday April 18 Charity went to work out at the YMCA in their hometown of Holdrege, NE. Life was good. Life was normal. She worked out regularly at the Y.
Thursday April 19 Charity feels some numbness all along her left side. It's a bit unusual for her but not that bad and maybe something that will just go away.
The numbness persists. Charity calls her Mom, Sylvia Schroeder. They talk about it and Mom says, "OK, Charity, I won't worry about it if you get it checked at the doctor."
Charity gets checked at her local clinic. Her normal doctor is not in but a PA checks her and concludes that it isn't anything to worry about. However they schedule her for an appointment with a doctor for Monday April 23.
Monday morning April 23 Charity gets a followup checkup with her local clinic at 1pm. Her normal doctor is not in but another medical doctor exams her and immediately orders an MRI. At 3PM the first MRI results shows something on the stem of her brain. The Holdredge doctors immediately get her scheduled into the Nebraska Medical Center in Omaha for the next day.
It will be etched in my mind for the rest of my life where I was when we got the phone call. At about 5:00 pm Monday April 23 we got a phone call. Sylvia took the call while I finish changing out of my office clothes.
I was tying my shoes in our bedroom area. Sylvia comes in and crawls on the floor saying something like, "this is really bad Phil. The MRI showed something on Charity's brain. They are having her go to Omaha to check in for some more checkups." We crumple on the floor together. We don't believe what we are hearing. We hold onto each other, cry, and wonder, "Lord what's happening? What does this all mean? Is this something bad, or something that will just go away?"
What do we do? Should we go to Omaha today as well (3 hr drive), should we go tomorrow?
We throw some things into our suitcases, get a bite to eat, call all our kids and leave for Omaha. We don't know what we are driving to. We don't know what to fear or what to trust.
Along the way, I make several phone calls to make arrangements for being out of the Avant office.
Charity has an appointment to check into the University of Nebraska Medical Center at 9:00 am Tuesday April 24.
Charity and her husband Jeremy stay overnight at her sister Heidi's place while Sylvia and I stay overnight with our daughter Amee. We make arrangements to meet them at the hospital at 9:00.
Tuesday April 24 - When we arrive at the med center we wonder where and how we will locate them. As we get off the elevator we walk toward the information table, another elevator door opens and out walks Jeremy helping Charity walk.
When we check with the Patient Admissions, we find out that a bed is not available until 12:00 noon, there are no tests scheduled for the morning.
The wait gets a bit annoying. We sit, walk around together, wait some more.
However, an attentive Mom notices that Charity seems to be getting worse the longer we wait. Her dizziness increases, her ability to walk deteriorates. Sylvia goes to the check-in desk and lets them know what's happening. A nurse comes and gets Charity into a wheel chair and by 11:00 we are on our way to check her into her room.
Tuesday, April 24 afternoon, the doctors order a long list of tests and exams to explore four main areas of possible causes for the lesion in the brain stem. They are looking, 1. possibly a stroke 2. possible an infection 3. possibly MS or an MS type disease 4. a tumor
Cart loads of vials of blood are drawn, EKG, etc. etc. In the late afternoon they do a spinal tap and about 7 PM send her for another MRI.
We leave our daughter for her first night in the hospital, unsure where this road is going to take us.
Wednesday, April 25 - We get to the hosptial early in the morning to be there for any possible visits with doctors. The attending Resident Dr. is helpful.
The neurologist comes by in the morning and reports on the second MRI. The images are much better on this one. Their report is that there is definitely a lesion in the brain stem about the size of a walnut. It is on the right side of the brain stem, therefore affecting her left side. However the location of the lesion makes it very difficult to do any surgery and probably not even a biopsy, but the neurologist will check with the neurosurgeons to see if it can be done.
Their approach however will be to exhaust all the current exams underway and any others to see if any of those will reveal something before trying to access the brain stem area for a biopsy.
The doctors then show us on their computer the pictures of the MRI.
During the day they conduct further tests looking particularly for evidence of infection or a stroke. One of the tests is to send some type of camera down into her veins and heart to see if there is evidence of a stroke. When they wheel her to the cardiology department Charity fainted. Jeremy at her side thought she had died. They got her out of the wheel chair and she came back to the room on a bed. It seems her dizziness and fasting (for the exams) had brought on the fainting.
In the afternoon Dr. "Bill" the neurosurgeon comes to visit Charity. They are puzzled by her fainting. He confirms the difficulty of accessing that area of the brain, but says a biopsy can be done. Other colleagues in the hospital can do this type of delicate biopsy. However any kind of surgery in that area is almost certain to be catastrophic results, vegetarian state. Dr. Bill prepares us for the worst, saying that with the progression of this lesion, it seems to indicate to him the real possibility it is a malignant fast growing tumor.
That evening our spirits are particularly low as we look face into the reality that this could be fatal. We need to be prepared for it.
Charity and Jeremy's oldest, Sofia, had been staying in Holdrege. They had made arrangements for her to stay until the week-end. After this doctors conference they arrange to bring Sofia the next day to Omaha.
Thursday, April 26 - Jeremy gets a call from the hospital early in the morning that Charity is not doing well and he should come to the hospital. His brother in law calls us and tells us that Jeremy had left in a hurry but he didn't know why.
Sylvia and I rush to get ready and head to the hospital. In route, Jeremy calls us and says she and Charity would like us to come. We are frightened the lesion is progressing very rapidly. We wonder if its going to hinder her ability to speak.
Justin, Charity's 19 year old brother, is at LeTourneau in Texas. Up to this time we have kept him posted on Charity's progress. But his final exams are to begin the next day, April 27. We had told him to finish his finals before coming to see Charity.
While in route to the hospital we decide we better have Justin come as soon as possible. I call him and tell him to pack to come home. To be ready to start driving to Dallas as soon as I make a few arrangements.
We arrive at the hosptil and check in with Charity. She's actually not too bad but had had a morning of nausea.
I move ahead with plans to fly Justin to Omaha. I arrange for Ken Fosters to take him to the airport and decide on a 12:50 flight. I call Justin and tell him to start driving to Fosters. I finish purchasing the ticket and call that information to the Fosters. Justin makes the flight and is in Omaha at about 2:45 pm. We are all relieved to have him with us.
Jeremy's parents also decide to fly and drive to Omaha this day. Jeremy's Dad happened to be a four hour drive away. They all arrive at the hospital around 3:00 pm.
That afternoon we find out they want to move ahead with the biopsy the next day at 10:00 am. We are so thankful now that we were frightened in the morning and moved to get Justin there. Now he can be with us through this very delicate brain surgery.
Thursday night at 6:30 a special prayer meeting is held at Valley View Baptist Church. I attend, as well as Heidi, and Amee. We intercede for God to guide the doctors the next day in the biopsy.
Friday, April 27 - We all get to the hospital around 8:30 and have a time of prayer and Scipture reading with Charity. They wheel her out a little after 9:00.
There are about 20 of us gathered in the surgery waiting room. It's a somber group as we pray, read scripture, wait, talk, wait and wait. The procedure is supposed to be an hour. We find out later though they had to delay it in order to administer platelets to thicken Charity's blood. THey had put her on baby aspirin treatment (for stroke) so needed to counter that before doing the procedure.
At about 1:00 we finally get a report from the doctor. She is fine. She came through well. The biopsy will be examined and result may be in on Saturday or Monday.
When we see Charity in her room still under anesthesia, her left hand is all curled up, but in about an hour this straightens and she can move it.
We are so glad to see her on the other side of the biopsy.
Saturday, April 28 - Jeremy and I talk in the morning and we decide we should wait with getting "preliminary results" from the doctors and wait until they can give us a complete biopsy report. The emotional roller coaster is just too much. Doctors have varying opinions. Some bring glimmers of hope, others paint a darker picture. We would rather have the facts and truth in completeness rather than have incomplete assumptions.
We also ask the medical staff to give us an hour warning to when that report will be given so we can call family and have them there.
We try to begin making these waiting days a time of calm in the midst of the storm. We know the next big emotional hurdle will be the biopsy report.
Sunday, April 29 - Sylvia and Justin go up to the hospital to be with Charity. I wanted to be in the house of the Lord with brothers in Christ and just listen to His Word, and pray.
Charity's room was bustling today with gracious visitors, bringing a lot of cheer. She has quite an extensive network of family and friends. Just her family of parents, in-laws, siblings, siblings-in-law makes quite a group. We congretate in her room, take breaks in the lobby, take turns at her side, treasuring every moment we have with her.
Monday April 30 - Today we learn from the medical team that the biopsy results will not be in for several days. The neuropathologist who needs to review and read those results is out of town. We may not know until Wednesday at the earliest and most likely on Thursday.
We enter a waiting game. The George family makes plans to extend their airline tickets to accomodate the sliding schedule.
The steroid and antibiotic treatments seem to be holding any deterioration in check. Her strength is actually increasing but her coordination on her left side has suffered a lot. We're not sure if that's from the mass on the brain or from the biopsy proceedure.
Today they continue doing physical therapy with Charity. One excersise was to take wooden block with her left hand and place them in slots on a board. It was sad to see her work so hard to do such simple movements.
Our prayer today is that her heart will not become hardened to the Lord. Charity and Jeremy have demonstrated such trust in God through these days. We are amazed. Praise to the Lord.
Tuesday, May 01 10:30 AM - Sylvia and I got to the hospital early enough today to be sure to be here when the Resident Doctor did his rounds. (We missed the doctors everytime yesterday. They seemed to come by everytime we stepped out of the room).
Charity's strength on her left side seems to be stable and her coordination is improving. They will continue physical therapy. The Dr. confirmed that we would probably not have the biopsy results until tomorrow, or even Thursday.
We have also learned that there is even a 10% possibility that the biopsy will not tell them what the mass on her brain stem is.
We hope to break out some games today, (Settlers of Catan), and pass the time in some light hearted fun.
Jeremy's parents (Rodney and June) are here, and his two sisters. Charity's sister Amee will be arriving just after noon with Justin and Heidi will come in the late afternoon.
We are prepared to move heaven and earth to make sure Charity gets the best possible diagnosis and treatment possible. We rest in the reality that everything rests in the hands of the Almighty.
Tuesday May 01, 11:03AM
There are many carrying people sharing their care during this time. Some have even set up other web sites with updates, information and photos of Charity, Jeremy and their two kids Sofia and Isabella. Check them out at these links
Picture of Charity
Charity's page
Tuesday May 1, 9:00pm - When we left Charity this evening she had several dizzy spells in the last couple hours we were with her. They gave her medication for the first one and it helped for a while.
The George family and us (Sylvia, myself, and Justin) had a time of prayer around her bed on our knees. We pray for God's healing and His name to be glorified.
It was hard to leave the hospital and we left instructions with Charity and the nurse to call us or Jeremy if she felt she needed one of us during the night.
We really want to know what is wrong so we can begin treatment. We may get results of the biopsy tomorrow, but it may really only happen Thursday. We understand a note is sitting on the neuropathologist's desk to get to Charity's case as top priority when he gets into the office.
Tomorrow may be the day.
Wednesday, May 2 10:42am - Charity had several dizzy spells during the night, and she continues to have them during the day. Otherwise her condition seems to be quite stable.
It was a restless sleep for me last night. I lay half awake, half asleep as my mind mulled over her situation. Something just didn't seem right.
1. The team here originally wanted to run the course of all the tests and exams before attempting the delicate brain biopsy.
2. Last Thursday they made a decision to move the biopsy up to Friday. They just sensed the need to find out as soon as possible what was wrong with Charity.
3. They hoped to have pre-liminary results by Saturday and maybe full results by Monday.
4. Now, the word is that the neuropathologist is out of town and won't be able to read the biopsy until Wednesday or Thursday.
5. Our gnawing quesion is, why does everything hing on a dr. who is out of town? Don't they have qualified pathologists on staff, other than one person? If not why don't they have this referred somewhere else? Why all the urgency Thursday and Friday when results couldn't have been had anyway for a week?
6. We hope to ask those quesitons today.
7. We have begun some outside consulting to help advise us that our current strategy is going the right direction.
We continue to rest in the sovereign hand of the Lord, even though we pass moments of lots of tears, fear along with normal conversation, prayer, reading, playing games.
Wednesday, May 2 5:34 pm - The waiting game continues to find the results of the biopsy done last Friday. The latest update this afternoon is that the Neuropathologist is back and working on the biopsy, however he needs to send the slides/samples out for more stains. This means the results may come in tomorrow, or they could slip another day to Friday.
In the meantime we are actively consulting with Neurologists around the country to make contingency plans for two scenarios:
1. If we don't get a conclusive diagnosis with this biopsy we may ask to be referred to another center, for a second biopsy. We are doing research on which center might be best for that.
2. If we get a worse case scenario, (some type of malignancy or glioma tumor) we may ask to be referred to a center that specializes in that type of treatment. Glioma would be the worst of the worst, as we understand it be almost certainly fatal.
Charity is showing improvement in her walking coordination. Her dizziness has improved this afternoon. She has been showered in cards, greetings and love from people all over, even overseas.
So, we wait, pray and wait for the results to come in.
Just wanted to say thank you so much...that doesn't even begin to describe our gratefulness to each and every one of you who has wrapped us up in countless prayers and acts of love and service. You are God's goodness and compassion to us in this dark valley.
Do you all see the beauty and majesty of our God the way we do? Do you see the beauty being revealed in His church the way that we do? Though we are sad, and perplexed and without understanding, we are NOT without HOPE.
Pray that our doctors, nurses, and technicians will see CLEARLY the majesty and glory of our God in us, our family, an in the Body of Christ worldwide as they flood this place with messages of hope, love and encouragement.
Pray for Sofia and Isabella to be protected from anxiety and worry, and that God will use this circumstance to draw them, win them and keep them unto Himself as they grow up. Pray that they would be women who hunger after God's righteousness, and who thirst for His presence. Pray that they would love God more than ANYTHING.
Pray that we would love God more than our lives, that He might be greatly magnified in us, and that He might dance and sing over us as His name is lifted up among the nations.
Bronwyn reminded me of this verse, and it is fitting. "Be still and know that I am God. I WILL BE KNOWN AMONG THE NATIONS. I WILL BE EXALTED IN THE EARTH." That is our prayer, that through this circumstance, this will be true.
With all of our love.
Jeremy and Charity
Wednesday, May 2, 8:50pm - Anyone who has gone through a similar situation in having a loved one being diagnoses for a potentially fatal illness knows the emotional ups and downs along the medical roller coaster.
This morning we were quite discouraged by the delay in getting the results of last friday's biopsy of the lesion on Charity's brain stem. We pressed the medical team for an explanation. During the day we expanded our search to verify with other neurologists whether we were following a correct strategy.
This evening before going home Charity's lead attending physician stopped by to visit and with him we reviewed the situation. We got many questions answered. There is a good possibility the biopsy results will be ready tomorrow afternoon. They will also be repeating the MRI in the morning to see if the lesion has changed, grown, or shrunk in the last week.
So we began the day on a low note, went lower during the day, and then ended up encouraged. I'm sure the road ahead will have many other ups and downs.
8:30 AM - we got a phonecall from the hospital while getting ready to go down there again. Apparently some information is coming out of neuropathology that the biopsy does include options other than the worst case scenario. This is very encouraging considering the alternatives. However no options are "off the table". We don't want ourselves or any of you to get hopes up prematurely. We'll keep you posted during the day.
11:57 - The neurological team with lead Dr. Murman will be visiting patients on the floor starting after 2:00PM. There are biopsy samples getting further "stains" today and possibly we'll will hear a final report this afternoon.
We are telling ourselves we need to be prepared for the worst case scenario, but are all feeling optimistic we will be hearing "better" news.
There is a real possibility the biopsy results will still not provide a definitive diagnosis. In that case we are prepared with some contingency plans for referal to a larger medical center.
3:27 PM - We are all congregated waiting for the doctors to make their rounds. There are 10 of us with her in her room and several more in the hall outside her door or in the lobby. Some are playing cards as we wait. Others take turns at Charity's bedside. We hope the longer the wait means that the pathologist will have a complete report ready by the time the lead Doctor makes his rounds to this room.
The medical team has been very good, even though we wish the results would have been quicker.
Charity did good during the MRI. It's important for her to keep totally still during the procedure. Cards, email and balloons keep arriving.
Overall Charity is in good spirits today. There is a bit of anxiety in the air but we'll hold together as we hang onto the Lord through these next 24 hours.
We've added some photos taken during these days. Click the Photo link above.
The doctor came by the room at 5:15 and we got our one hour notice that he will be coming with the biopsy report and the MRI report at 6:15 We pray and wait for accepting those results with understanding.
We had a 45 minute consultation with our lead doctor. Good News! The biopsy was successful in getting a sliver of brain tissue and there were NO CANCER cells in this sample. This does NOT rule out that it could be cancer but indications are not that way.
MS is ruled out
Infection is ruled out
They are looking at this as a STOKE. Unusual for a healthy girl like Charity but prossibly due to a congenital blood vessel bursting.
The results for the MRI show slight shrinkage and don't indicate cancer.
They also ran an MRS (spectrostopy) and the imaging from this were more stroke like than cancer like.
Charity will be released for physical therapy and occupational rehabilitation (either at home or at a facility).
She will be under observation in the weeks ahead to detect any negative changes of possible cancer. If that would happen we would probably need to go for a second opinion.
Thank you all, thousands of you who have been praying for our daughter.
We praise God for "giving back" our daughter.
Last night after receiving a favorable report from the doctors, Sylvia, Justin and I stopped for a bite to eat. I mentioned to them that I felt like we had been taken TO THE BRINK, the brink of possible death and then were saved from going over.
Justin instead said he felt like we fell over the brink but God's hand reached down and caught us and held us.
We thank all of you for interceding and praying. We see God's hand at work in Charity's life and health, in our lives, in the lives of many others as well.
Again, here is a review of Charity's situation. Although the diagnosis is not a clear black and white diagnosis it does give much hope.
- They found no cancer in the brain stem biopsy (although this is not a guarantee that there is none).
- The MRI and MRS tend to indicate a stroke rather than cancer
- The rapidity of her symptoms indicate a stroke rather than cancer
This diagnosis will be confirmed over the next weeks and months as they continue to do periodic MRI imaging to see if the lesion shrinks and if she has no further deteriorating symptoms.
It's odd to be so thankful for a stroke in a 26 year old, healthy young mother who works out daily at the YMCA. This has been good news to all of us. However, Charity has a long way to go to regain her health.
Her status now is:
- She can walk with a walker mostly by herself but usually assisted.
- She can use her right arms, hands, legs etc.
- She is gaining strength on her left side
- Her left arm and hand have suffered the most, from the stroke and possibly in part from the brain stem biopsy.
- She is unable to do most simple tasks with her left hand
- Her speech is pretty much normal, although I think it has taken more effort for her.
Her needs in the near future:
- She will need to go through rehab (either at home or in an institution) This will be their next big decisions. I know they are eager to be home again, but an institute may put her on a better path to recovery.
- Some modifications will need to be made in the home to help her get back being a Mommy.
- Initially she will need help at home, Sylvia is ready to stay with her if needed.
During these next weeks and months she will have that uncertainty hanging over her head that the diagnosis was not 100%, and any setbacks will arouse fears that cancer might be there.
Thank you again for praying. We see God's hand of care in Charity's life, healing, loving and preserving her life.
We plan on keeping updates on Charity's progress here on this journal for the next weeks. They'll probably be less frequent on into the future but we'll keep you posted.
We've heard of some inaccuracies on her situation reported back to us. If you hear of inaccuracies you might refer people to this site to get an accurate picture of the situation.
Thanks again to so many who pray. God is good. But as Charity said last evening, "even if the results had not been good, God would have still been good."
We've encountered a glitch in the insurance Jeremy and Charity have. They will cover only a minuscal part of rehab ($20 a day for 20 days a year).
The medical advice we are being given at this point is that it would be very good for Charity to get a week or two of intensive rehab as an inpatient. We are looking at alternatives to do the same for her at her home, or ways to get assistance at an inpatient facility.
4:45PM - From what we are learning Charity could greatly benefit from spending some time in acute rehab. That's a place much like a hospital where they focus on physical therapy, occupational therapy and also have medical assistance.
We also understand that her first few months are the most important to get as much recovery as possible. However checking into a center like that is tremendously expensive, somewhere in the area of $1600 a day. Charity's insurance company will cover $20 a day!
We heard that someone in the insurance company is trying to work something out where she could get some extra coverage. Pray with us that this could happen. I think Charity could greatly benefit from this.
Our backup plan is to rely on friends and family to carry out a "self-help" program of rehab from her home. There are several individuals from her home church (Trinity Evangelical Free church of Holdrege) who may be able to help support this "self help" rehab alternative.
12:54 pm - The word today, (Saturday) is that Charity will be released from the Nebraska Medical Center sometime on Monday, May 7.
We are all so relieved and delighted that Charity's diagnosis turned out to favor a stroke rather than cancer. Strange to think of a stroke as a blessing. At the same time we realize for some time we will live with the uncertainty that they can't rule out cancer 100% yet.
The other reality is that Charity has suffered a very debilitating stroke. Her big challenge now is to recover the strength and coordination on her left side. The coordination of her left hand has especially suffered from the stroke and possibly from the brain biopsy as well.
We are exploring every way possible to get her admitted into an acute rehab facility for at least a week of intensive rehab, ideally 2 weeks. Nearly every physical therapist we have talked to has emphatically advised us to get Charity into an intensive program and not compromise by doing it "ourselves" at home.
Charity's brother, Justin, will probably return to Longview Texas tomorrow to begin his primary flight training summer school next week.
Sylvia and I plan on helping Jeremy and Charity get back to their home in Holdrege. We'll help them get back into their home and help them pursue getting into rehab. Sylvia will stay on with them for the week and I will return to Kansas City and my responsibilities at Avant as soon as possible next week.
God has been so good. He is good not because things have turned out better than we feared, but because His very character is good, and righteous.
It's 7:52 am and we are waiting for the doctors to make their rounds here at the Nebraska Medical Center. This is the day Charity should be released from the hospital. There are several big concerns yet.
- Charity seems to have become more listless and her speech more slurred in the past 3 days.
- Charity is a bit afraid of going home. She doesn't feel ready.
- I think she and Jeremy have decided to get her checked into an acute rehab facility in Kearney, Nebraska. Today we will need to do some quick and major work on how to get that financed. It looks like we will need to piece together multiple things. (health & human services, appeal to insurance company for increased coverage, grants & help at the rehab facility, contributions from family and friends.
In just a few minutes Charity should be discharged from the NMC. It seems she has been accepted by her insurance company for acute inpatient rehab in Kearney. We don't know the details yet until we get there. We are not sure to what extent they will cover her.
She has not progressed during this last week she has had physical therapy here at the NMC.
We should be finding out once she gets admitted what they can expect for her to recuperate in the use of her left side.
She is somewhat discouraged today, probably wondering if she will ever be able to regain the use of her left side enough to be a Mom on her own at home again.
Thank you as you continue to pray for her. I think she needs moral and spiritual encouragment more than anything right now.
Charity arrived at The Good Samaritan Hospital in Kearney, NE around 4:30 this afternoon and go checked into their inpatient Rehab facility.
She will be kept busy from about 7:00 am to 4:00 pm with a variety of rehab activities.
Kearney is about 30 minutes from Jeremy and Charity's home so this will make it possible for her to see her two girls and also have visits from their home church.
The best time to visit her is from 4:30 pm to about 7:30 pm.
This is a discouraging phase in the whole process of getting back to a normal life. She is coming off the treatments during her time at the med center and this leaves her a bit weak and speech slower.
We left Charity this evening about 8:45. We don't have a good feeling about how she is.
The medical staff has reassured us that she is quite normal for a person coming off steroid treatment. The reduction in steroids causes some of the previous swelling to return in the brain stem. They will be changing her medication. We understand what they are telling us but we can't help but feel a bit scared.
The increased swelling has made her speech slur significantly, to the point of being difficult for us to understand her. This morning her speech was very slightly slurred and she seemed lethargic. Tonight she is lethargic and very slurred in her conversation.
Tomorrow morning the head physician of the rehab center will be seeing her. We ask you to pray for these things.
- That her doctor understand a clear strategy to rehabilitate Charity.
- The her docotor and medical team be wise and attentive to understand if there is still some underlying medical problem that is not yet resolved.
- That all of us close to her, (her husband Jeremy, and us as family, friends have peace and assurance that Charity is in God's hands and that all humanly possible is truly being done to bring healing and restoration.
- That God bring honor to His name by making one of His "youth" walk and run again Isaiah 40.
Sylvia and I made it here to the Kearney hospital by 7:00 am. We want to be here when Dr. Suleiman makes his rounds. He is the Doctor of Rehab medicine.
Today will be filled mostly with evaluations by the rehab team. Charity is in great need of encouragement to be able to focus on rehab.
One of the big questions all of us around her have is whether her medical situation is stabilized or not. Since she checked into the hospital two weeks ago in Omaha she has progressively gotten weaker and now her speech has been affected.
When we saw her this morning is seemed that her speech was stable from last night and possibly slightly clearer. Its hard to tell because if she is emotionally overwhelmed then its hard for her to speak well. If she is in control emotionally she can form her words much better.
Pray with us today that we can get some answers and reassurance that she is medically stable, that if she is stable we get that assurance, that if she is not medically stable we be told that honestly and be able to appeal to whatever is humanly possible to find the cause and treatment.
We place our dear Charity in the Lord's hands for another day. This morning Jeremy is with their two kids, then at noon we switch and Sylvia and I will be with Sofia and Isabella. Then after 4:00 we will bring the two girls to see Charity.
Charity has been going through evaulations today and is under observation. To us (non medical people) we see her degressing rather than stabilizing or progressing.
During speech therapy today (about 30 min ago)she nearly fainted and went clammy and they had to call the emergency team. They will be doing a CT scan to see if something in the lungs provoked this.
They may move her out of the rehab floor and onto the regular floor of the hospital if they don't feel she can undergo the rigors of rehab.
We want to know IF and WHEN we should ask to get her to a larger center, such as Mayo. We've not been down this road before. We don't want to be alarmists but we don't want to regret the decision we make today, some day in the future.
While in Omaha we had a lot of family around both Jeremy's side and on our side. Once the biopsy results were given we all felt we were on a plateau and things would stay stable. So we have all dispersed.
I took Justin to Kansas City to fly back to Texas on Sunday. Jeremy's family have returned to their jobs. Our other daughters are still in the Omaha area. So we find ourselves in separate places right now.
Thanks for being with us. And the Lord goes with us through the waters not matte how deep. Is 43.
Charity in a few minutes will be transfered back to Omaha by ambulance. They will rescan her there and re-evaluate her.
From there it will be easier to get her to Mayo Clinic than from Kearney. We are making our request for her to be seen at Mayo
Charity's transfer to Omaha to the Nebraska Medical Center in the ambulance went well. When we arrived she seemed in better spirits and had already had a CT scan. At this moment they are preparing her for an MRI. In the morning she will have speech therapy.
Her sisters came soon after she arrived and that seemed to cheer her up a bit.
Her current condition is difficulty with talking. If you do call her don't expect her to respond very well if she does. But she enjoys having people talk with her. She also is showing slight cognative difficulty.
We will get the reviews by the doctors and see if they can give us a clearer diagnosis. If we don't have something that puts us at ease we plan to ask for a referral to Mayo.
Jeremy seems to be holding up fine and it faithfully assiting at the side of his wife.
We are making our appeal to get Charity to Mayo clinic. We don't know how the wheels of medical burocracy work and understand that getting her there is not guaranteed that they will take her etc. We will do our best.
She has declined significantly these last 48 hours. We have hope in God but do not know His plans for her life.
We are coming to grips with the reality that she may never return to her former self.
Pray for us today to make wise medical decisions, appeals with the medical team today.
Pray also for Justin who in the midst of this downturn has returned to Texas to start his flight training this week.
Charity continues to enjoy and listen to the notes you send her way.
Unfortunatly our laptop has gone on the blinks again. If there is someone in the Omaha area who could print up the greetings and bring them to Clarkson let me know, or who may have a laptop they could lend (this of course is contingent on what happens if she gets tranferred to Mayo)
The 4th MRI showed that the swelling in the brain stem has increased. The lesion is larger but that may be due to the swelling. Previously only the right side of the brain stem was affected but now the left side is also being affected.
It is still a mystery to the neurology team. Some doctors have one hunch and others another. The worst case scenario is back as a possibility, (a high grade, very fast growing glioma tumor). However NOTHING is still not definitively ruled out.
We have reqested to get a second opinion and have her referred to Mayo Clinic. The wheels are in motion and we should hear in the next hours when and how she will get to Mayo.
While Charity's faith is strong, she is very down that no one seems to know what's wrong, or able to "fix her". She has repeated several times, "I'm a mess"
Pray for the Lord to sustain this young couple in their faith. Pray for their girls Sofia and Isabella. Pray for all of us family around her. This has been such a long emotional journey for all of us. Pray that the doctors here and at Mayo move ahead quickly in this referal.
This is Day 18 in this deep walk in the "the vally of the shadow of death" for the Schroeder and George family and many hundreds of friends. In the midst of it all "we fear no evil". (Psalm 23). We know that evil cannot and will not characterize the Lord in His walk with us through these days.
The Medivac van arrived at Mayo about midnight last night. Jeremy traveled with the medivac van. Sylvia and I arrived about 45 minutes later. Charity traveled sleeping peacefully most of the way, (they had given her a sedative for the 6 hour trip).
When they arrived Mayo had many of her files already on hand, they knew her name when they checked in. The Resident doctor and nurse did an initial evaluation until about 1:45 am. We finally were in bed about 2:00.
The trip to Mayo was a good time for Sylvia and I to do a lot of talking. It was one of those few moments in the last eighteen days that we haven't been surrounded by doctors, hospitals etc.
We know that God in his almight power could easily perform healing, either through the intervention of some of the finest doctors in the world, or through His miraculous intervention. We don't give up on hope, but we are accepting the reality of what may be.
We will visit the medical team on Charity's case between 9:00 and 11:00 am this morning. I will have more to say after that.
Pray especially for God's peace to just surround Charity. She is totally aware of things around her but is almost totally unable to comunicate that in words. More on that later today. We leave for the hospital now.
She is in St. Mary's Hospital, Domitilla building room 2nd floor, room 2-326
A team of doctors filed into Charity's room at about 10:00 this morning. They are collecting information and history to see if they can figure out what has remained a mystery.
They need to get the biopsy slides and information from Omaha to Mayo. That will be overnighted.
The Nebraska Medical Center is one of the finest medical centers in the midwest. We thank the great staff of doctors and nurses that attended to our dear daughter Charity. We made some good friends there.
Our first impressions here at Mayo is that they have a level of excellence that's hard to equal. We have great peace that we made the decision to get Charity here. We realize that they cannot work a miracle that only God can do. We are comforted though that we have some of the finest physicians and medical teams looking after Charity.
Charity was a bit more alert this morning. She was able to formulate a few faint words. She is however very mentally alert. Please, please pray for her spiritual, emotional, mental peace in these days.
Lord please fill her room with the peace of your presence, the love of family and friends, the ability to face the real possibility of death with "the peace that passes all understanding"
Charity's attending resident doctor reported to us about 30 minutes ago that the radiologists here at Mayo have a different interpretation of all the MRI's Charity has had up to this point than they had in Omaha.
He also said they are doing many, many tests, (at this moment they are doing another lumbar spinal tap. They have spent a long time in consultation about her case.
Their is a strong possibility from the MRI's that this is a rare form of a bleeding type of benign tumor. If this were the case it would have the most encouraging possibilities for treatment, recovery and rehab.
There is also a lesser possibility that it is a glioma tumor. This would be the harshest scenario but according to Mayo not a scenario without any hope. There are things they are doing today in some of these cases.
There is also another possibility that this is a form of MS that looks like a tumor. This also has treatment possibilities.
Her doctor stressed that right now its imperitive they work real hard at finding out what it is. So far its still a mystery but they are determined to discover what it is.
Before closing I told him that I would be praying for him and his team to find an answer and I told him there would be thousands of people all around the world praying for him and his team.
I'll post the doctors to pray for in another journal entry when they are done with Charity's spinal tap.
We've been down this road before, our hopes get up and then are dashed. Hope is good though. Hope is good for Charity now. Even if the outcome doesn't change I am grateful we made the decision and had the opportunity to get Charity to Mayo.
Place these doctors before the throne(and many, many more. They hold a key in finding what is wrong with Charity.
Consultant: Dr. Kumar
Residents: Dr. Zivkovic, Dr. Faust
Rehab Physician: Dr. De Pompolo
Several thoughts the Lord gave to me this morning before heading for Mayo.
Hebrews 11:1 "How faithis being sure of what we hope for and certain of what we do not see."
1 Cor 13: "And now these three remain: faith, hope and love. But the greatest of these is love."
Today is day 19 in a terrible spiral of events that we never imagined and I'm sure we never bought tickets for the event.
Today though I see things from the perspective that we have great Faith, Hope and Love and not Deception, Despair, and Pity.
Here is they key...
Faith in what is not true is deception.
Living without hope is despair
Love without faith and hope is pity
We love Charity not pity her because we have faith and hope.
We have hope and not despair because if they can identify the real health problem there are potential treatments to consider.
We have faith and are not deceived because our ultimate hope is in He who is true.
Charity is in a desperately critical condition but we have hope, as Dr. Zivkovic said to me he likes to look and work at the problem from a perspective of HOPE.
Pray for the teams of doctors, technicians and even the Fedex workers as they deliver the importance biopsy slides that should arrive today from Omaha. Pray for wisdom for the doctors to truly understand the cause. Their chief goal is to invest their energy to find out what is wrong.
Today Charity has an MRI and multitudes of other tests.
Those of you who come to visit her, please bring with you a message and spirit of Faith, Hope and Love. Those are the things she needs now to fight off Deception, Despair and Pity which are just as dangerous as whatever has caused this dark spiral of events.
These last days have been some of the darkest we have faced. I have been meditating on God. He is all we have, even if this turns out to be the best it could be. I wanted to share with you some of the good things God is doing in this dark valley.
Today I was literally sitting in a green pasture, by quiet water thinking about Psalm 23. One thing in that passage stands out the most to me, and it is the one thing that brings my soul to silence and rest. Life is not about the green pasture or the quiet water, or even about the dark valleys that God in His wisdom and goodness leads us through. It is about knowing the Shepherd who goes before us. Jesus has gone before us in obedience, suffering and death, and THEN to the eternal pleasures at the right hand of the Father(Psalm 16:11), and seated us there with Him (Ephesians 2:6-9). He is a good rabbi. He leads us and prepares us for all situations in life, and that includes dark moments. The beautiful thing is that in the darkest of valleys we can still say with utter conviction that the "boundary lines have fallen for us in pleasant places" not because of the comfort of our circumstances, but because the good shepherd never leaves us. He is my green pasture. He is my quiet water. He speaks peace to my soul in the valley like I have never experienced it before. It is confusing actually. the other day I was breaking down under the weight of this whole thing with Paul, Doug and Murray. Today my heart was singing about Jesus because He is sustaining us. Charity and I laughed alot today. Our marriage is stronger than it has ever been. She can't talk right now, but I just feel like we are so much more connected. The church in Holdrege, Rochester and across the globe is RADIANT! People see the beauty of the Church as you all faithfully lift us up in prayer and as they see you meet our needs. To me that means one thing. God is being glorified in this place because the church is doing what she is called to do. Hasn't this been my prayer? God is answering the deepest desires of my heart in this valley. He is glorifying His name. He is mobilizing and unifying His church on a global scale in this circumstance. Just one more thing that makes my heart rejoice. Charity and I were medivac'd here to Mayo Clinic yesterday. ON the way up, as I was sick in my stomach over what is happening to Charity, God gave me a wonderful opportunity to share my faith with the driver of that medivac. I am not sure what God will do with that, but my heart rejoiced as I got to praise the name of my God in the midst of someof my deepest pain. God be praised in this valley. May His name resound and shatter the walls that so often seem to whisper despair as we hold fast to the right hand of our Savior.
I wanted to say these things to honor God. May He be honored by these words. Please pray that we persevere in blessing God in this trial.
To Trinity Church there in Holdrege. We love you. We just love you. Words escape me. Thank you all.
To the youth group at Trinity. I love you and I miss you. I think of you all often, and I so desire to be with you again. Follow Him.
This morning Charity had her first MRI here at Mayo. It wasn't an MRI of just her head, they did her whole spinal column. It was a long time for her but she came through seeming OK about it.
The medical team seems relentless in trying to uncover any clues for arriving at a diagnosis.
A first carload of friends arrived about noon from Charity's home church. They brought news and pictures of her kids.
The pressure on the brain stem at this time is now affecting Charity's emotions. She may frequently break out in tears and crying. But after engaging her in conversations about things of interest in daily life, friends, family, she seems to really enjoy hearing. She may even smile at times.
After her long MRI today Charity got a shower. Then this afternoon she has been sleeping. Sylvia and I sat beside her as she slept. She slept so peacefully. As I looked at her face it almost seemed for a moment that the dreadful disease ravaging her body was gone. She was my little girl again. I know she is not what she used to be, but we love her all the same. We love her as she is. Sleep my little girl.
This afternoon two car loads of friends from Trinity Evangelical Free church of Holdrege Nebraska arrived to spend time with Charity. Jill, Sue & Tim arrived first. They began transforming Charity's antiseptic clean hospital from into a home atmosphere. They blew of choice photographs of Charity's kids, Isabella. They got a CD player and CD's to bring music into the room.
Then the second car load arrived with Matt and Lori their daughter Sydney and their precious cargo of Sofia and Isabella (Charity and Jeremy's 2 children).
Soon Charity's room was transformed into an arena of chatter, kids dancing, telling stories. Charity gazed into the eyes of her kids again, reveling in their presence.
What a blessing they brought into her room. Tonight, Jill will stay by the bedside of Charity. The hospital has a cot for family or friends to stay overnight.
Much of Charity's day was taken up by the MRI in the morning. That meant the doctors didn't stop by for their usual rounds between 9 and 11 AM.
However behind the scenes consultations are taking place, lab results are coming in. There is only this to report...
- Nothing has showed up in the blood or spinal fluid so far.
- The radiologists still see indications of a cavernous hemangioma (benign tumor)
- It didn't seem the biopsy samples had arrived yet from Omaha.
The Mayo continues to function over the week-end. So tomorrow Charity will be having further tests. The quest continues to find a cause.
Jill stayed with Charity overnight. It seems like she had a more peaceful night. When Sylvia and I arrived she did seem more restful, and from appearance slightly more envigorated.
Dr. Zivkovic was in the room when we arrived. He explained the tests that were continuing today. They are widening the exploration into the benign tumor area and MS. It's been of interest to them that in my Schroeder blood line there have been several cases of MS. It was also uncertain whether the biopsy slides had arrived from Omaha.
When the doctor left Charity wanted to say something to us and the three of us (Sylvia, Jill, myself) just looked at each other trying to read what her lips were trying to say. Then we got the alphabet card and with her stronger arm she weakly pointed out the letters, B-E-T-T-E-R. She wants to get better. That was followed by emotion and tears on her part.
Mayo clinic continues to work over the week-end. Most things don't stop. So today she has a number of tests.
Pray for her to keep her strength and hope in the Lord and hope in a solution during these days. If they do find a diagnosis that is treatable we really pray that she be strong enough and not too far gone to make a descent recovery.
On Wednesday when Charity checked in to Mayo a request and release forms were faxed to Omaha to have the biopsy samples and slides overnighted to Mayo.
Up until now Mayo had only received the written report. It remained a mystery as to where the slides might be. The doctors here suggested I try to get in touch with the Nebraska Med Center to get those slides to Mayo. The problem was that the pathology dept. in Omaha was closed (for the most part) to the public over the week-end. After making several calls to some key people (a nurse Jade in Omaha and Charity's family doctor Tuck) we finally were able to confirm that the slides had left Omaha on Thursday, so they are in the system somewhere. Mayo is very interested in seeing the biopsy samples in the quest to find a cause.
This morning all of us as family were also concerned that Charity had not eaten significantly since Monday this week. We felt she needed the calorie strength to keep on waging her valiant fight. We approached the medical staff and they said she could have anything on the menu as long as it was fed in puree/pudding consistency.
Charity was listening to us talking with the doctors and nurses about eating. We noticed she wanted to say something to us. So we gave her the alphabet card and had her spell out what she was trying to say. Between Jeremy, Sylvia and myself we just weren't getting it. It was frustrating having her wanting to say something to us and us being so unable to understand her.
Finally we took it slowly one word at a time, writing each word on the white board in her room. When we confirmed each word she came up with the sentence... "IS IT THOUGHT THAT IT WOULD KILL ME?" What she was asking was, "Do the doctors think that eating will kill me?"
We all broke out in laughter, she as well. We reassured her no. That the concern was her choking on her food, but if it is in puree it would be good for her to eat.
So we ordered pureed chicken, potatoes and gravy, and peaches. Then we wrote PEACHES, POTATOES, CHICKEN on slips of paper. She would point to a slip of paper every time she wanted another bite of her selection.
We are so thankful she can now eat again and increase her calorie intake.
Today at 4:00pm Dr. Zivkovic gave a progress report on the quest for a cause. He is an exceptional Doctor, just recent from Europe, always one to look for hope. His report is as follows:
1. The reports from the radiologists on the recent MRI's done here continue to confirm the hypothesis that this is a cavernous hemangioma, (the most treatable of all options). CAUTION, they still don't have a conclusion but things are moving more in that direction.
2. The slides are here from Omaha! The pathologists will be pouring over them to look for every clue possible. They really hope that there are cells in the samples that will confirm or not the radiologists thinking.
3. A cavernous hemangioma is a bleeding benign tumor. A lot of the damage is done by blood slowly bleeding into the brain. Since that is their strongest hypothesis at this point they are taking Charity off the blood thinning drugs and we will use "mechanical" ways to keep her from forming clotting in her blood, (things like those things they put on her legs, trying to keep her in motions, keeping her up etc.
4. Charity can eat anything from soup to steak as long as it is pureed. This will help her increase her strength.
5. IF, this is only an IF! IF this is a hemangioma benign tumor she will have the greatest possibilities to make the most significant recovery and rehab. No one is about to venture to say what she will recover, but we can always keep a hopeful attitude.
6. We asked Dr. Zivkovic about insurance, whether Mayo would be able to help us make sure the insurance company comes through with covering the expenses. His answer was that he had come from Europe so he doesn't know how everything works over here, but he will sign anything needed to make sure she gets coverage. Also Mayo will be sending Social Workers to help us work through those issues. The bottom line they will do all possible to make sure she doesn't "fall between the cracks".
7. We concluded our conference with Zivkovic reminding him that thousands of people around the world are praying for him specifically and all the team.
Charity had a restful night last night. Jill stayed with her again, what a blessing these two nights Jill has done with Charity.
This morning there were two visits from Dr. Zivkovic, a visit from a neurosurgeon, and a visit from the lead neurology consultant, Dr. Kumar.
Charity's room was filled with visitors when the neurosurgeon came by. He is exploring with the neurosurgery team what to do once a diagnosis is reached, if it is reached.
It was not an encouraging visit. According to him he is not sure they can come up with a conclusive diagnosis. If they do not know what it is they may not be able to do any treatment. If it is a cavernous hemangioma they may be able to do surgery using some of the latest cutting edge technology. This would be extremely risky. If they can successfully stop the progression of the illness he was not too promising of a whole lot of recovery of what Charity has lost so far.
Our whole group of family and visitors plunged into a dismal mood after his visit. If Charity cannot recover any of her abilities at all she would be limited to a state of not being able to talk, needing to be hand fed by others, bed bound.
Dr. Zivkovic and then Dr. Kumar made subsequent visits. They remain open yet to the possiblity that a diagnosis could come about yet and that recovery of some abilities may still be attainable, it is not impossible but would be a long, long, hard road.
We held a long season of prayer with Charity, sang songs, annointed her with oil in prayer. Ultimately as from the beginning we are in God's hands. Where is He leading us? Where is He leading Charity, Jeremy, Sofia, Isabella?
We all feel a deep brokeness. We want Charity to keep up her spirit, her struggle to persevere, her purpose to hope, her trust in the Lord. We don't want to give her false hopes, nor overwhelm her with only a bleak picture.
This afternoon, Dr. Zivkovic came by again and communicated to us some of the exact wording of the neurosurgery team report. Their report recommends the possibility of surgery and that with it "they expect improvement".
He explained again that neurosurgeons tend to be very blunt and harsh, (something we have been observing). That's because they don't want to give undue expectations that they may not be able to meet.
Brain stem surgery is extremely risky but Mayo does a number of them every year. This surgery makes the brain stem biopsy done in Omaha to be kids play.
They still need to finish the examination of the biopsy slides from Omaha. They don't have a conclusive consensus as to what it is, but hope to arrive at one by Monday or Tuesday. Having a good idea what they up against will help them do the surgery correctly.
From what I understand from the doctors the surgery on a cavernous hemangioma is technically more difficult than on a glioma tumor because it is such a delicate structure. A glioma would be easier to extract but long term prospects would be more difficult.
Charity wants to go ahead with surgery if its recommended. We will know if and when it will be done during this week.
We are learning a lot about LOVE on this Mother's Day. To love someone who is totally helpless. To accept and love them as they are, who they are now. Charity's life is totally dependent on the people around her, to feed her, bathe her, move her, excercize her, entertain her but most of all to love her.
Today was mother's day. I am privileged to be married to the best mom in the world. She makes me smile even in this difficult time. I want to write all of you with my take on what has happened today. The neurologists agree and have the same opinion that this lesion is indeed a benign tumor that can be treated. That is good. Another thing that is good that the neuro surgery team is seriously considering surgery, which is good just in the fact that they are considering doing it. They have written in a "written report" that they expect improvement. The neuro surgeon sounded much less optimistic when he talked to those who were here this morning. They have to be that way. They can't go in to a surgery with the person and family expecting them to deliver exactly what they said they would. Things aren't that simple in the brain. With that in mind, we all need to pray like few of us ever have. We need to pray in complete faith. God is God. He doesn't need surgeons, radiation, medicine, or good reports. He us unshaken by evil tidings and unalarmed by His enemies. We stand in His strength and we should pray like it. I am out in the blue. I believe that Jesus is going to heal Charity. I know with certainty that He will answer this prayer of mine. I don't know how, but I do know He is good. He is able. He will be exalted among the nations.
Would you join me in praying like we are called to pray...In faith, with no questions in our minds about the character of God.
I am completely submissive to the will of God. I can be angry, frustrated, sad, feeling sorry for myself and for Charity, confused or dismayed OR I can trust God. I choose to trust God with my the most precious gifts in my life. They are His. Join me here. It is so much easier and lghter to live this way. Jesus is true when He says, "My burden is light."
Amen. So be it. May His name be praised.
Pray that God will use the doctors to perform this miracle that we are believing in. Pray that the doctors would be amazed at God, however God chooses to act. This is not random. Our suffering will not be wasted, and will not be without purpose. Look around. He is at the center of all of this. Rejoice. Rejoice. Rejoice. We love you all so much. Please do not give in to despair. There are no clouds here.
Love
Jeremy
Sylvia stayed with Charity last night and said Charity rested quite well during the night. This morning however Charity's responses to others around her seem to be slowing down. She also doesn't seem to be able to swallow. That's a bit discouraging because yesterday she seemed to be making good progress in swallowing.
They are ordering another MRI this morning to evaluate the situation about a possible surgery. There will be many medical decision made in this day, from our part, and from the part of the medical teams. We need all the wisdom from God in making these.
In the midst of all the whirlwind there are some fun and humorous times. Yesterday Justin and I were showing her the Mothers Day Cake some people had brought for her. While we held if for her she began moving her better right hand and plunged it into the cake and laughed. Justin and I laughed. Then we held it again for her and she plunged it again and grabbed a bite of cake and put it to her mouth.
Justin spent a good while with her during the late afternoon/evening and enjoyed taking care of his sister.
Charity did well in her MRI this morning. We've been back in the room with her for several hours now. Neurosurgery is studying the situation and we hope they come with some kind of plan of action. Charity has indicated she would like to undergo surgery. No one is venturing to predict what or how much of her neuro deficits can be recuperated after an eventual surgery.
We wait, watched a movie, and try to get answers from Charity. She is unable to move her hands. Once in a while she can nod her head or answer yes or no with eye blinks. She can still smile and at times will laugh or cry. Right now we are watching family photos on the LCD screen TV in her room.
This whole episode has taught me so much about what love is. We love Charity for who she is now, as she is now. She is just a precious creation of God. I would change places with her at a heartbeat if that were possible. But at a point where we are all totally helpless to help, helpless to change the course of events, we just stay by her bed, hold her hand and reassure her that we love her.
We heard about 15 minutes ago the results to the MRI. Essentially the bleeding and swelling in the brain stem is unchanged from two days ago. That is positive. However she has continued to lose more and more of her neurological abilities. She is down a path that eventually will lead her into a state of being totally locked in and only being able to use her eyelids. We as well as Charity feel that going ahead with a risky surgery is probably our only choice of action. Pray with us as we face this big decision.
Today is day 23 since Charity's first MRI that showed there was a problem, or day 27 since she noticed the numbness on the left side.
We waited all day yesterday for neurosurgery to come by and finally we all went home and left Sylvia her to be with Charity overnight.
Sylvia did get a message late last night relayed through the Resident Doctor on call that neurosurgery was not wanting to do any surgery, and that they would come by between 7 and 7:30 when they did their regular rounds.
Jeremy and I got here by 6:50 but as of 7:45 there has not been any neurosurgeon to consult with us.
Our neurologists came by and said the vascular neurosurgeon was problably hesitant because the risk of doing more damage by surgery was greater than not doing anything.
Her condition today:
- She cannot cough
- She cannot move either leg
- She cannot swallow
- She cannot move either arm at will
- She can move her head
- She can see and watch TV
- She can hear and is alert mentally
- She can smile, laugh or cray at times
- She can feel touch
On a positive note this morning, as small as it can be, Charity seems to be moving more. They have her on steroids again and today she was able to move her thumb, (give a thumbs up when I asked her a question). She is also showing more movement in her neck and shoulders. The plan seems to be to do nothing except steroids and see if she will improve.
It doesn't seem like a plan with much hope. We have many more questions than answers. Maybe there is something in all this that we haven't seen yet.
We are all physically and emotionally exhausted. The four of us, (Charity, Jeremy, Sylvia, and myself) have been at this non-stop now for these 23 days. It's like being in a dark cyclone that only gets darker and tighter and fewer options. We hang onto our trust in God Almighty, and His uncompromising love for us. We hang onto those truths which we know to be empirically true while going through the day in a dazed numbness.
If there is one thing we do want to do, that is to continue to fill Charity's room with the Peace of God and unconditional love. We don't know how to do that for the long road ahead.
We go through this day tired, but resigned to what God would do. We are hanging around the hospital in case Neurosurgery comes around for a conference.
Doing no surgery may be the best. Charity seems to respond to steroids, ever so little. Rushing into surgery could be a decision that can't be changed.
More later I think they may be here.
Jeremy, Sylvia and I had a lengthy visit with neuro surgeon, Dr. Wetjen. It was explained rather clearly that surgery at this time would almost certainly be devastating for Charity. She seems to have responded well to steroid treatment so this is the best plan of action.
The cause of the lesion on her brain stem remains a mystery. It is unusual and doesn't follow the typical scenarios. Although most of those in neurosurgery and neurology tend to see it most likely as a cavernous hemangioma.
To do surgery without knowing what it is would be so risky.
The most important things right now are:
1. Following a wise medical approach which includes
- keeping her on steroids and praying for shrinking of the lesion
- keeping her airways clear and open (because she can't cough)
- keeping her calorie intake sufficient (because she can't swallow)
2. Surround her with love, acceptance, encouragement to persevere
3. Continue to intercede in her behalf. She is again in God's hands and her ultimate destiny and attainable goals are in His hands and not in man's.
4. Work hard in rehab. If she can recover some of the neurological things she has lost that would be great. Again, if the damage is mostly from swelling then if we suceed in stopping the swelling her potential for recovery is greater than if the damage is from bleeding. So far the MRI's seem to support that idea, but no one is certain. They do some very amazing things with rehab of people in her situation.
Last night was like a nighmare without sleep. This morning I feel a sense of relief that Charity is still with us and that we won't have to make a decision that could potentially be fata. We still have her to love.
This afternoon Charity went through a lengthy proceedure to insert a feeding tube. It's a temporary type. They hope she will recover swallowing capabilities and be able to eat by mouth. However in the meantime they need to keep her nutrition up by this means.
She also needs to keep her airways open. I think they have some things planned for that as well.
She also needs to keep her spirits up, accept he reality of her situation, but move forward. All of us around her are learning what it is we need to do. I'm particularly grateful to an long time ago childhood friend, Richard T. who is a neurologist today, for his realistic words of encouragement.
We have persevered through another day. We thank God we still have Charity with us. Charity's sister, Amee, will be staying with her tonight.
We grasp onto the truths that God's character is good, sovereign, loving, all powerful. But everything a person believes is put to the ultimate test as we serve at the bedside of Charity.
We were thankful not too many days ago just for the fact that she could speak and move a hand. Yesterday I was thankful she could move a thumb in the morning.
Have you ever been thankful that you can cough and swallow? Those are two vital functions, so simple, so taken for granted, yet so wonderful for sustaining life. Yesterday we were thankful Charity could cough a few times. Yet she can't enough to keep her air passages clear. Every now and then they need to intervene and suction them clear.
The steroids Charity is on are really only treating the symptoms. Unless God intervenes and casues whatever is creating the mass and swelling she will not keep stable and improvement would be out of the question.
If we can see some improvement, some signs that her neuro functions are still there, just hampered by the current swelling. They still may consider surgery down the road. Probably after weeks or months. Every little indication of positive progress is a HUGE step, even the most minute sign. We pray for God's intervention. We have pleaded and interceded. For some reason that only He knows, He has chosen to allow this ravaing illness to strip Charitiy little by little of some of lifes most simple and treasured functions.
Sylvia and I rested last night, maybe the best we have in several days. Jeremy has left for the hospital with his mom. Amee will come off duty and get some rest during the day. Someone else will sit by Charity's bedise this evening, loving, caring, encouraging a person who cannot give in return.
We are thankful that Charity can still...
- recognize people when they come to her room.
- inside she is very much alert but nearly all locked in.
- She can see
- She can blink her eyes to communicate
- We think she can smell
- She can hear
- She can watch TV or listen to us
- She can laugh at times
- She can cry
We are her only source of mental, emotional, and spiritual input. Pray for wisdom that we understand and choose wisely what she needs each day.
Today is day 29 from the first symptoms and day 25 from the first MRI.
Sylvia stayed with Charity last night. I got to the hospital about 8:00 this morning and switched places with Sylvia.
Yesterday and today several times Charity has succeeded in movning her thumb. Every time we see her intentionally move the thumb we all break out in cheers and Charity smiles and laughs!
This is very encouraging. The neurologists are looking for EVERY sign of movement. This gives them greater hope that the neurological deficits are not permanent damage and that she may be able to recover a number of deficits.
Dr. Meyer, (one of the top neurosurgeons here at Mayo) stopped by this morning and gave me his take on the situation.
- He says others have been throwing around the idea that this is a cavernous hemengioma, he is not so sure.
- He is in agreement with 90% of those who have followed Charity from Omaha as well as Mayo that this is NOT typical of a cancerous glioma tumor. It has come on too fast (almost overnight, just a few short days)
- He is more of the opinion that this is some type of inflamation (MS type).
- He reaffirmed that while the biopsy in Omaha was a correct decision and a logical step in the diagnosis that the biopsy has added to the deficits.
more later
One of the most encouraging things to us today is that Charity is stable. She hasn't gotten noticeably worse. Perhaps in minute ways more movement.
This is really encouraging to us. Mostly because it means we have Charity with us for another day. Each day I can come to her bedside and look into her eyes is a day to be thankful to God she is with us.
During these 25 days it seems that she has rarely gone more than 3-4 days before taking significant degressive steps. This journal records periods of stability, followed by dramatic steps downward. We are thankful that today seems stable.
Several things we are trying to do as a family and friends.
1. We are trying to improve our communication with Charity. She can glance from left to right, or blink her eyes. So we are trying to use word boards, Yes and No questions to help her tell us what she needs, or just to carry on a conversation with her. As I write this, Justin, Amee and Jeremy are trying to find out why she is discomfortable.
2. We are trying to make a schedule for her where we will make her take naps followed by times of Physical therapy or speech therapy excercises the therapists are helping us learn to do.
3. Sometime today we may get her into a special wheelchair and take her outside into the inner courtyard of the hospital.
4. We are trying to find a house to rent here in Rochester, not too far from the hospital where we can re-create more consistent home atmosphere for Sofia and Isabella.
We have located a hospitality house possibility. It may however cost $1000 to $3000 a month to rent this place. It could accomodate immediate family as well as out of town caregivers able to make it to Rochester to give a hand. We feel the expense may be worth it to give all of us caregivers closeness to the hospital as well as a home atmosphere where we are not being invasive in other peoples' homes. People have been so very generous and gracious but a fixed home base may be even more helpful.
Just wanted to say something that God impressed upon me recently. What is the best thing God could give us in this? Most of us, including me would jump and say, "to heal charity completely." When I though more on that question as it came into my mind over and over again, just meditating on God's character, it struck me in a new way that curing charity is not the best thing that God could give us. The absoulte best thing that He can give us is HIMSELF. Praise God for offering us continually more of Himself. While we are still praying for and believing in God's healing ability, we can always ask knowing that we will get the answer we most need in knowing Him.
Still hoping. Still believing.
Jeremy
As I was driving to Mayo this morning I was in deep thought, maybe discouragement, maybe deep sadness, I don't know if depressed would be correct, maybe. When evenings come I labor over what's happening, that the life of my daughter could be very short, that her state of being "locked in" could be permanent or could worsen. I read the Scriptures to keep my focus on Him. But sometimes could it be that the Lord seems distant, unresponsive, or maybe I am just so numb that I'm just out of touch.
As I neared the parking garage of the Mayo hospital I prayed. "Lord show me today something that confirms you notice, that you care, that you are there. We need something encouraging even if the outcome is no different that it is now."
My answer/s came very soon after I entered Charity's room and exchanged places with Charity.
1. A doctor came in from neurosurgery. I learned later he was the chair of neurosurgery, Dr. Meyer. They are exploring another hypothesis for Charity's situation, and a possible treatment. This is encouraging that its not just a waiting game.
2. Charity at times is able to move a thumb
3. We are discovering better ways to communicate with Charity, (really for her to communicate with us) through signs, blinks, glancing etc.
4. We may be able to take her outside
These were all encouraging to me and a real answer to me that He does care, maybe He even weeps over the suffering of one of His children.
Thank you Lord for this encouragement today.
Even a day without any significan improvements is a good day, no really great day! Any day that there is not increase in Charity's neuro deficits is a big sigh of relief.
Her greatest discomfort now is the feeding tube in her nose. Tomorrow they are going to move that to her stomach. It will still be removable in the future but will be less discomfortable for her.
Her muscles in her legs and arms also seem to have spasms that are uncomfortable. Sometimes when we know she is discomfortable it is a challenge to figure out what is wrong. We go through a series of yes & no questions. Her brother Justin seems to be the best communicator with her. They seemed to always have a bonding relationship.
She never did get out today in the wheelchair, we hope to get her into the outdoor courtyard of Mayo hospital.
We did succeed in getting her a nap in mid morning and mid afternoon, and also worked with her on her various therapies.
Sylvia will be staying with her tonight and I hope to get to the hospital earlier in the morning to be here when the doctors make their rounds. They seem to come very early.
Today is day 30 from Charity's first symptoms or day 26 from her first MRI.
Every morning I come to the hospital there is a sense of anxiety, fear, wondering if Charity deteriorted during the night. Wondering what she may have lost of her abilities during the night.
This morning it was with great relief that she greeted everyone with pretty much the same abilities as yesterday. There actually may be a few extra things she can do.
- She seems to be able to move her thumb a bit more at will.
- It seems she was able to give the doctor a very slight squeeze with her left hand
It is a continual struggle. The emotional struggle with hope, why me?, anguish, inability to communicate are probably the biggest struggles right now.
The medical teams still do not have a diagnosis. It seems more and more, time is the key element to help them know what it is. The radiologists tend to think it is a cavernous hemangioma. The neurosurgeons are not convince.
We don't know if they will keep her here for long term either. We need wisdom and guidance in these decisions.
Today we began hearing rumors they were wanting to discharge Charity from Mayo. This afternoon we had a long conference with someone from the neurology team.
They do not have a definitive diagnosis. (We've been down that road before). They tend to think it is a cavernous hemangioma but not the whole team is convince. They need TIME to pass in order for them to do another MRI and observe what is happening.
Charity will continue the steroid treaments and we will be very particular about several conditions in looking for the right place for her.
- It has to have qualified skilled nursing care
- It has to be close to very qualified medical facilities, (such as Mayo)
- We would really want it to have other young people her age.
- We would want it to be a place with high tech rehab, to give Charity as much hope and possibility to become as much as possible as a person.
We are also looking at getting a THIRD opinion and have all of her MRI and case history review by Barrow Neurosurgical Associates in Arizona. We hope to have that FedExed today.
We are also trying to research and get in touch with high tech communication systems for people in situations like Charity.
MAYBE SOME OF YOU READERS OF THIS JOURNAL HAVE INFORMATION TO HELP US WITH THE FOLLOWING. If so email me at phil1972@mac.com
After talking with neurology this afternoon we had a session with the social worker on Charity's case. She is doing some research on possible locations for Charity. She needs to be under qualified medical care, but at the same time begin rehabilitating from the extreme deficits she has.
Right now she is pretty much what they call the "locked in" syndrome. We hope and pray that some of the muscle uses will be recuperable. We don't know and no one will make any promises. A lot has to do with what happens with the swelling in the brain stem.
While we wait for that swelling to hopefully go down we would like to get her into some meaningful rehab.
We would like to locate a facility that...
1. First of all is qualified medically to deal with the ongoing treatment and needs of Charity and also close to other qualified centers.
2. Second a center that can inspire hope and purpose for a 26 year old young mother. (being in a nursing center for the elderly will not be the greatest inspiration for Charity.)
3. A center that has expertise and success in dealing with young people in a "locked in" type syndrome.
It would be great if a place like this were somewhere relatively close to the Nebraska area.
Dr. Kumar, Charity's lead neurologist visited this morning. They have a change in plans. They have seen such good improvement in her over the past days that they want to put her on higher doses of steroids, (maybe different composition or strategy) over the next 3-5 days.
This is of great comfort to us, that she can still stay on here some more at Mayo.
We will still be pursueing a search for an appropriate rehab facility for Charity. Thank you to so many of you that have suggestions. If you have further suggestions you can email them to me at phil1972@mac.com
Last night Charity was able to give the nurse some resistent pressure on her right leg. During the evening she was also able to move her right arm at times at will. She can't always do that but the fact that she can move some things at will are very encouraging.
Thanks for your continued prayers.
This evening in the small town in Italy where Charity went to grade school and junior high (Magazzino di Savignano Sul Panaro)the village is holding a village festival. Her classmates are putting up a special booth with pictures and information about Charity and raising funds to help her. We thank God for Charity and Jeremy's testimony around the world.
This evening day 31 since Charity's first symptoms comes to an end. She continues to show minute steps of improvement. On the whiteboard in front of he room we are listing them for the doctors.
- right leg movement
- right shoulder movement
- right thumb moving better
- nodding head better
- open mouth wider
- moved right arm
The movements are very weak and slight but are huge in neurological terms. As I understand it anything that moves means a potentially recuperable deficit through rehab.
The increased steroid regime they have Charity on carries with it increased risk of infection. They regularly check her blood for infections. Through ALL of these last 31 days Charity's blood, spinal fluid, vital signs show a TOTALLY healthy body. Her red blood cells, white blood cells, etc. etc. are very good. It's just that bit of swelling in the brain stem area (that remains a mystery) that has so crippled her otherwise healthy body. This evening the check on her lungs also showed them to be totally clear, great news from just a few days ago.
Today was moving day for the Schroeder and George family entourage. We are trying to consolidate our housing situation particularly so Isabella and Sofia can have their Daddy come home to them in the evening. A gracious couple in Rochester has opened their basement to allow us to set up home there for Sylvia and myself, Justin, Jeremy, Sofia, Isabella and Jeremy's mother June.
Today is day 32 in Charity's ongoing saga. A couple of days ago they inserted a PEG tube in her abdomen for feeding via a tube (since Charity is not able to swallow). Last night as they were feeding her, or administering something via the tube she began having violent pain. Sylvia was staying with her the evening and called us at the house. Charity can't talk, but we could hear her cries and moans of pain. They have increased the dose of morphine but can do that only temporarily. It seems to help slightly at the beginning and then the effect seems to go away. The increased morphine also brings with it an increase in nausea.
Today is Sunday and we hope some of us will be able to join in worship at some of the Evangelical churches of Rochester. The churches of this town have been so gracious and have come around Charity and us. They have shown themselves as the loving members of the body of Christ.
As far as new muscle/neuro movement, we don't see any increase today, but no losses either. Monday May 14 (day 26 for Charity) was her lowest point of greatest neuro losses. Today we are on the 7th day of no increase in losses and some minute (but gigantic) gains.
Today is also the second day of following a new treatment strategy for a plausible diagnosis of Inflammation. This involves giving her two different types of steroids.
Dr. Kumar came in this morning and said that tomorrow another Dr. Krum will be taking the lead of Charity's case. He said Charity has been one of his most ill patients, if not the most ill and that they really hope this new strategy will show improvement.
Just a word to let you all know what is happening. Charity had a VERY painful night last night. They found the cause and are placing a cathiter temporarily to alleviate the pain. She has a large amount of retention, and it needs to be dealt with to avoid infection, due to the increased vulnerability. Please pray that this pain will subside and the cathiter can be removed in the next couple of days.
Futhermore, with an increase in dosage of steroids, we are seeing some amazing improvements every day. She is moving ALOT more than she has in SO LONG. She has squeezed with both hands, moved both legs, lifted both arms, is swallowing better, so her lungs no longer have crud building up in them, she attempted to say some words, and made sounds, she has moved both shoulders and is nodding her head SO MUCH BETTER.
All in two days. THis is good, but we are not out of the woods to say the least. We are thankful to God for these encouraging days. I think Charity is encouraged in these movements. What may be happening is that the inflammation that is in her brain stem is decreasing slowly and alleviating pressure on the "nerves" or whatever sends signal from the brain to the parts of the body that she is trying to move. This is a good sign and MAY indicate that the nerves are not damaged, only cut off in a way. This is based on my understanding, so don't place anything definitive on what I say, but it is encouraging nonetheless.
Praise God.
Also, I am sure you heard that there is a town in Italy that got together and raised over $1300 for Charity. It was the childhood home of Charity, and it was organzied by Charity's best friend Sara. We are so thankful for these wonderful people. We rejoice in their care and concern, but we rejoice all the more that through Charity's testimony, and ours, that God's name was exalted there in that place.
Praise God.
ALSO, for any Trinity kids reading this, I would love to get an email from you just letting me know what is happening in your lives. I long to be back with you all, and to continue serving all of you.
In Christ's love and strength.
Jeremy
Today is Monday, day 33. Several times in this month Mondays have greeted us with discouraging news. Today instead when I arrived at the hospital I was pleased to find that the pain in the abdomen has gone down. Charity did wake in the night with Sylvia here and had a bought of pain. So she is off morphine and will use it only as needed.
We haven't noticed any new movements from Charity this morning, but those often come later in the day. She does still nod her head better, uses her right thumb regularly, showed some resistance in her right leg and moved the leg slightly on command.
This morning I read a good number of the greetings from the two sites for Charity. The Scripture verses are a comfort as well at times provoke a few tears. I suppose that's quite normal that tears make up part of hope and encouragement.
As the medical teams carries on the physical battle I feel one of our greatest challenges as "care givers" is to carry on the encouragement, mental, and spiritual battle. So much of Charity's healing depends on Charity keeping herself mentally and spiritually encouraged. We need so much wisdom and strength from above to persevere in this.
When I got back from taking Justin to the airport Jeremy and the others in Charity's room were rejoicing that she had intentionally moved her right arm all the way to her chin.
After a few moments she moved it for me, I cried real tears of joy, Charity laughed.
Just as I wrote these words she moved her arm again. It's like when she first began moving her thumb. It would always happen everytime she tried, but by today she can move her thumb anytime she wants and we look forward to her doing it at will.
We all sit around her and watch the "fireworks" each arm movement is so good.
Today marks 30 days from when Sylvia and I joined Charity and Jeremy in Omaha and began this never ending saga. We have gone from one crisis to another. Sometimes we thought things would calm down and stabalize only to be met with new challenges. We wonder when a semblance of stability will come. When will a bit of normal life return?
I was actually contemplating flying to Kansas City today, meet up with Justin driving north from Longview, TX and also stop in at the Avant office to reconnect with colleagues there. Partly due to not wanting to leave this battle in behalf of my daughter and partly costs I think I'll stay put here in Rochester for the time.
First a bit more about yesterday.
Yesterday, May 21, Dr. Krum took over the lead of Charity's neurological team. He came by and we reviewed again for him her history. He had already done study and review on her file. She is one of the most critically ill patients they are attending to.
He didn't offer any empty promises but said they continue to be interested in her positive response from the steroid treatments.
Then we had a delightful time with the speech therapist. Charity joyfully showed the things she could do. From the therapist we were reassured that inside Charity is totally there mentally. Inside she is speaking and talking to us but the words don't get passed the nuero blockage in the brain stem, so no words come out her mouth. Charity, emphatically made signs confirming that she is talking to us and so VERY frustrated with us that we don't communicate and understand her better.
She did a lot of moving her arms during the day even laughing at herself when she was able to move something.
Today we hope to get her in a special wheelchair and take her outside. She may have another MRI and they are considering two further "weapons" in the battle: Not sure if I know the spelling of the terms,
- an IVGI
- a plasma exchange
So things are happening.
To you, who have been made righteous by the power of our God in Christ Jesus...in whom is all my delight...around the world,
We endure for several reasons:
We endure to know Christ...
We endure for the joy set before us...
We endure for you...the church...
We have heard many times that God is using this trial to bless you. We rejoice that though at times we feel as though we are wasting away, our suffering brings honor and glory to God, and spiritual blessings to you.
I work with teens in Holdrege, Ne. They are dear to me. My love for them has grown exponentially in being here. I miss them. I think of them often, and knowing that they love us is one of the things God brings to mind when I am lost in anxiety and dread. I am keenly aware that whatever we endure here is for their benefit. I pray that God will sustains Charity and I and the girls so that many will see how great our God is.
Not only do I think of those that I work most closely with, but I think of the body of Christ worldwide. My dear brothers and sisters in Christ whom I love, though I don't even know their names. I just want to say that if you are in some other country, and you are reading this, I just want to say that though we don't know eachother, and though we may never meet here on this earth, we are bound in the Spirit together, with one Lord, one hope, one Spirit, one purpose, one baptism, etc...I just love you. It gives me great joy in the privilege we have to labor under this suffering for your benefit.
In the love of Christ,
Jeremy, Charity, Sofia and Isabella
Charity just got back from another MRI. This time they used a contrast dye to see if that might reveal some things, particularly related to pursueing the possibility that this is an inflamation of some type.
Dr. Krum (her new lead doctor) seems to be committed to finding what this is and even pursueing a "plausible" diagnosis and treatments. The main treatment they are looking at now is a plasma exchange. It's a type of filtering of the blood and done over several days. This means her stay will be extended at Mayo. We are glad they are looking at trying some things. The plasma exchange should not have any detrimental side effects.
Today has been particularly discouraging for Charity because the list of "new" movements was rather short today. She was making so many new moves yesterday and laughing about each new thing that we think she was expecting to see a whole bunch of new things today. From what we understand though there will be many slow days in the path to recovery.
We need to use the term recovery very cautiously, because they still do not have a real diagnosis. The most positive thing is that she has not regressed in 8 days. But we don't know if that is due to treating the symptoms or the cause. She also remains the most ill person on the list of this neurologist team.
How did we ever get here? Sometimes that question is so bewildering. At this stage now we seem to be at an almost numb acceptance. Last night when I woke at my usual 3:00 am "can't sleep anymore" time I got out the book of Job and read through the first Job response passages. Reading those passages you see a man, still totally dedicated to God, but frustrated to an extreme. I wondered if those words might describe Charity's feelings at this time, an undeniable trust in God but as well a deep frustration about the situation she finds herself in.
The first report on the MRI from yesterday shows that some of the bleeding in the lesion has been absorbed by the body and some of the swelling has gone down. This is good news, more later.
Initially today we don't see a whole lot of new things she is doing. This sometimes changes as the day wears on. The one thing we did notice is a stronger cough.
Communicating with Charity frustrates me so much as her Dad. We are trying a gaze board but I am NOT always understanding her YES and NO so the words she is trying to spell for me don't make sense.
Charity had an MRI done yesterday as well as today. They were to do one with contrasting dyes yesterday but that didn't happen so they needed to repeat that today.
Dr. Zivkovic reported this afternoon that the MRI's show the lesion is not growing but may in fact be slightly reducing. The report is positive that they can go ahead with the plasma exchange next week sometime. That means Charity will probably be here at least for a couple of more weeks.
Progress is very very slow in reacquiring neurological abilities, but that in a sense can be expected. If they do succeed in reducing the lesion, (or if God in His own way heals it) we still do not know what neurological deficits are humanly speaking recoverable or which she may have for life.
Just that fact that whatever is happening in that brain stem does NOT seem to be progressing is of great comfort.
We have also finally succeeded in acquiring and sending the MRI images to Barrow Neurological Ass. and will have these experts weigh in with their opinions.
One of our greatest obstacles now is learning to communicate with Charity. We have tried a gaze board but there seem to still be some barriers in us being able to understand what Charity wants to say to us. She seems to be fully alert inside but there could also be impairments in her being able to get her thougths across to us in an understandable way.
A "locked-in" situation is really challenging to work with. We pray that some day Charity will be able to be healed out of that. Again we accept God's sovereign Will.
It is looking more like Sylvia and I will be able to take a few days away from this frantic saga. We plan to make a trip to Kansas City early next week, Sylvia will return to Mayo in mid week, and I will stay on to complete some of my responsibilities at Avant.
Something that I am learning is that it is easy to get lazy in prayer when things are looking up. Things right now are looking up, and I am reminded daily that my hope and trust cannot be in good news and glad tidings, and yes, green pastures. Our hope is anchored in God alone, and there our hope must stay.
Just a reminder to keep vigilant in prayer, so that you may KNOW GOD most importantly, but also in your prayer on behalf of Charity and I, and the girls.
KEEP LIFTING CHARITY UP so that her faith in Christ remains and endures this "defining moment" in her life. Please pray that God will draw, call and keep Sofia and Isabella.
These are my most urgent requests.
I love you all so much. Asylum kids, you are so on my mind and my heart all the time. I miss you and I can't wait to get back to you.
Jeremy
Today is day 37 in Charity's battle with her brain stem lesion. It is also the 11th day since her lowest point with gradual, very slow improvements.
As I write this, Charity is in the GI diagnostic center (gastro-intestine). Her feeding tube has caused problems during her time here and has again acted up. Yesterday they had to stop feeding her and today they will try to get it working correctly.
The battle for Charity has intensified in these last 10 days. The doctors are trying new things and she has remained stable.
However, the battle is not only a physical, medical one. All of us around Charity are noting the intensity of the Spiritual-Emotional battle she is engaged in. The steroid treatment (and the lesion itself) do affect her emotions. But added to that is her having to come to grips with the reality that she is NOT what she used to be, and she is NOT yet what she hopes to be.
There have been many moments of tears and crying for her in these last few days. Winning the Spiritual-Emotional battle is as big if not bigger than winning the medical battle. She has been valiant throughout this fight but she may be at her lowest point now in this Spiritual-Emotional battle. Pray for her. Pray for us around her to have wisdom from above on how to guide her, counsel her etc.
Linked together with that is the fact that those of us around her CONTROL her life. She is totally dependent on us for TV she watches, music she would listen to, what we might read to her, keeping her on schedule, turning her, calling nurses to attend to her etc. etc. We need wisdom to give her balanced, healthy, wholesome input each day.
They are really pushing things through to get Charity to the plasma exchange treatment as soon as possible. Maybe the Memorial Day weekend holiday on Monday is part of it.
Charity wasn't out of GI when they got orders to send her to another department where they put in the special IV for the plasma exchange.
The plasma exchange is done in another building of Mayo (the Gonda Building). It is across town and she will be transported there by gold star abulance for each of the two hour treatments. These treatments will take place of the next week or two. For those wanting more information about Plasma Exchange check out the link below.
http://www.news-medical.net/?id=12431
We would be delighted to see if this treatment really works on Charitiy. It would help the medical team arrive at a more definitive diagnosis, treatment and recovery plan for Charity.
This evening the feeding tube in Charity's belly started to leak again when they began feeding her. It's been over 24 hours she hasn't had caloric intake. We got the floor resident doctor as well as the resident GI doctor.
At this moment Charity is on her way for another x-ray to check out why there is still leakage.
If needed they may slow down the rate of feeding her.
Improvements in movements were very slight and subtle today. So subtle that Charity get a bit discouraged at the pace.
- She was able to move her right arm intentionally at will this morning. Her energy wasn't enough to lift it but I could feed her lifting it and assisted the motion. Then she would relax and let it down. She did about 5-6 repetitions.
- Charity's facial muscles showed improvement today.
- She seemed to be moving the tongue more and her lips came together several times.
The plasma exchange went good today. She came back a bit tired but not overly so. She will continue on these plasma exchange treatments through June 8.
The feeding tube checked out OK last night. The doctors think its just that the tissue around the tube hasn't healed up yet to form a good seal.
They have put Charity back on feeding at a slower rate (about 1/3 the rate from before). This is good, she needs calories to keep her energy up.
I also had more success today with the gaze board. Charity was able to spell several words to me correctly.
I also got her to make the mouse on the computer work a few times. She was able to scroll through a couple of greetings from people.
Tonight just before leaving the hosptial we asked Charity if she would "write out" a note for everyone. So using the gaze board she sends you this note...
"FEED ME FOOD. FOOD, FOOD, FOOD."
Today marks 39 days since Charity's first symptoms, but also 13 days of stability and slight improvement since Charity's lowest point on May 14.
This morning Jeremy was awakened around 7:00 because they were moving her plasma exchange appointment up to 9:00 from 1:00pm. We hurried down to the hospital so Jeremy could ride with her on the ambulance to the other side of town.
This afternoon Charity has had a lot of muscle spasms. We aren't sure why, or if its a good thing or bad thing. They have given her some relaxants but they don't seem to help. Her muscles cramp up and she has no control to release the tension.
This evening about 8:45 Charity's muscle spasms got really strong. We have been trying to keep her morphine use to only when really needed because it has other side effects that seem to make the feeding process more difficult. They have another relaxant/pain medicine she can use. They gave her some and in about 15 minutes she was relaxed and sleeping well.
Tonight one of her friends from Holdrege will be staying with her for the evening. This will give Sylvia her first full night of rest in many days.
This evening we also watched a video of a fund raiser done in Holdrege 10 days ago. Charity seemed to enjoy seeing the video of "hometown". I thought it might be emotional for her but she seemed to do good watching it.
Today I also tried some Assistive software for Charity to help her communicate. It's software that severly handicapped people can use, if a person has just one muscle in their body that works consistently they can operate a computer, write email, run artificial voice, etc. As Charity progresses in recovery it can be scaled up to her competency level.
The first time she was able to communicate a word, (other than food).
To try out the software further before purchasing we need to find the right kind of switch for her most reliable muscles, (probably her right thumb).
Just pray please for Charity right now. We are both exhausted of this trial, and it just seems like around every corner there is something that increases her suffering. She is having INTENSE pain. Everywhere. The doctors are at a loss. They don't even know what to do it seems.
We just need you to pray that God will act and soon. Science has done nothing but disappoint. I guess that is a clear demonstration that our only hope is God. We are waiting...just waiting...
Please continue to hold us up in prayer. This is just hard.
May God be praised anyway.
Jeremy
PRAY
Charity has had a very difficult day. She has cried out most of the day. Some of that seems to be emotional and spiritual and some of it is physical pain. Her skin hurts to touch and she has had abdominal pain. I don't have any medical answers, I'm just once again asking for prayer and begging God for relief. She is tired of this fight. It's time for us to help her fight through the power of the Holy Spirit. I'll keep you posted. - Jill Reed
Sylvia and I just arrived in Kansas City. We haven't been getting good reports from Mayo. Charity is in great pain, and its so hard to be away from her when she's not doing good.
We do need some time away. It's been 35 days we have been running from one emergency to another with Charity and Jeremy. I don't think we have eaten any meals at a table in a home setting in these 35 days. Tonight will be our first.
Lord, please show your love, mercy and peace to Charity tonight.
We need to pray against the enemy. Pray that our enemy will not be able to steal, kill and destroy Charity's hope, and reason's to fight. Today has been the worst day emotionally that we have faced together. Charity is deeply depressed, AS ANYONE IN HER POSITION WOULD BE. She has lost more in 35 days that most of us lose in a lifetime. We are just desperate for God to act on Charity's behalf.
Pray for me too. I am just tired and there is no rest in sight. I am all day with Charity, and then I go home and have to be daddy too and pretend that everything is just ok. I am not complaining, that is just my reality right now. I accept it, but I need you to pray that God will keep me in His strength and grace. I can't do this without Him.
In Christ,
Jeremy
Charity is relaxed and resting again. That is completely by God's grace and your prayers. It's hard to describe the relentless raging of her soul today. I cried a lot today. It's physical and it's spiritual. Keep praying! Pray she can sleep tonight.
She will have another plasma exchange at 7 a.m. tomorrow. Charity's parents returned to Kansas City today for a brief trip. Sylvia will return to Rochester on Wed.
Charity seemed to rest well until 3a.m. Then the crying out began again. She let me know that it was "heart" pain, not physical pain. Thank you to those of you in different time zones or those who were praying instead of sleeping. I KNEW that I was not doing battle alone. After 20 minutes of praying and singing over her, she rested again. This began again around 5:30 and lasted until the paramedics came at 7:15 to take her to her plasma exchange across town. She seemed to be scared about the plasma exchange, but that is hard to tell for sure. Her emotions may be displayed more than she is actually feeling. But when you sit by her bed it's hard to imagine she is not experiencing the depths of her cries.
She doesn't want to hear it right now, but she belongs to Jesus. He brought her with His own blood. Satan wants to discourage and defeat her, but Jesus already won. Would you continue to join me in bringing her (and Jeremy) before the throne of our Heavenly Father?
Also, thank you to those of you who signed the guestbook last night. I read them at 2 a.m. when the nurses were in the room and the entries brought encouragement to me at 3 a.m. I knew that other's had been specifically praying for these battles. Charity is not up to hearing or reading any of the entries right now, but maybe in a day, week, month or year she will be. Know that your words may bring hope to others who are reading them now.
On my knees,
Jill Reed
I am writing to you today to beg for your constant prayer, and intercession for Charity. She is not doing well emotionally. We need to interede on her behalf that somehow by God's mighty power, truth will pierce this darkness that she is in. She is not herself. My feeling is that despair is engulfing her life, Please pray that God will set her free and teach her freedom, especially as she feels very much in a prison of her own mind. PRAY. INTERCEDE in Jesus' name on her behalf.
Jeremy
(8:45 PM Central Time) Thank you for praying. Since mid-afternoon Charity has been in better spirits. Her sister Amee has arrived and is spending the night with her tonight. While I was here today her brother Justin and Amee were making her smile and laugh quite a bit. She seemed like Charity again. What will the night be or tomorrow?? Praise God for His answer to prayer today and keep interceding for her! Let's keep doing the fighting for her when she doesn't feel like it.
Thanks,
Jill Reed
Charity is doing better. Thank you for your prayers and intercession on her behalf. Just a word of testimony to the power of Scripture. Every time we read scripture over Charity, she has a very obvious emotional reaction to it, but it simply soothes her after we are done. Amen.
Charity is definitely depressed. She is going through an exhausting procedure every other day, she is highly medicated, and is just battling through some DEEP things. God must deliver her, and when He does, she is going to be a beautiful sight to behold.
She belongs to God, and He must keep her.
Just writing to let you all know some thoughts I had this morning on God. My life has become something special to say the least. What I mean by that is that I wake up and it is about two very simple things. It is about either agreeing with who God is, or living in despair. It is also about NOT thinking about tomorrow. I live on the strength that God provides. That is special. It is not easy, but it is good.
I read Psalm 73 this morning, and I feel life flowing through my spirit. It is complaint asking God why it is that the wicked prosper. Why do they not suffer, or have the problems that others have. The Psalmist is reminded of their end after he goes to the temple of God. He is reminded of God.
He then asks the question, "Who do I have in heaven but You? and "What is there on earth that I could desire that could compare with God?"
He then confesses that God is his strength. Amen. So be it.
The last few days, I confess, have been difficult, but I testify against the despair and difficult circumstances that we are facing that God's character is sustaining us.
I hope only that God is pleased with these thoughts and our enemy is dismayed by them.
Jeremy
Well, it has been another good, tough day. Charity doesn't seem to be herself today, but she is not suffering physically. Emotionally, I think she is DRAINED. I ask for your continued intercession on her behalf.
God has sustained me today, and I am writing to ask for you to pray for me as well. In the coming weeks I am going to have to make some very difficult decisions. I am going to be forced to make those decisions to seek what is best for Charity, and for our girls. Right now, what is right to do completely escapes me. I TRUST that God is the only one who has the wisdom I need and who can give me the wisdom I need to make these decisions.
I don't want to look ahead. I can't. I have to. But I can't. I need only face today today. I am in a difficult place, but my heart is calm, and steadfast, hoping in God.
Please pray MOST IMPORTANTLY for the healing of Charity's spirit and mind by God's truth. Please pray that God will do His work of holding her soul in His hand, never to let her go. Please pray for the healing of her body. Please pray that God will sustain me and give me His wisdom.
Please pray (SECOND MOST IMPORTANT) for God's protection and calling on the lives of Sofia and Isabella. Pray that God will use this for their good, and that they will love Christ above everything, know Him more intimately than themselves, and to servie Him with their whole lives.
I find myself dreaming of being home today, in Holdrege. I just miss home. I miss our church. I miss the kids there especially.
Today is just another WOW day. I can't wait to see what God does with all of this, so that WOW of confusion becomes a WOW directed only at the amazing character of our God.
I love all of you.
Jeremy
Just an update with some encouraging news about Charity. tonight we, as a family decided we needed to pray over Charity. So we did. I really feel like God made his presence FELT as we prayed. As we were praying Charity started to move her arms with more strength than I have felt in her arms in a long time. She was moving them on command with justin as we were deciding to pray and before we went in to pray. I asked Charity if she was moving them on purpose and she gave me a thumbs up.
I think that Charity was encouraged as she listened to us pray in faith over her life. We confessed God's character and submitted ot His will. It was just a GREAT way to end a very difficult day.
I really believe the Enemy is being threatened by all that is going on, and especailly by how much God's name is being magnified among nations. May He continue to make His name known, and to demonstrate His character. He is good and faithful and true. ALWAYS.
We expresed that we care more about Charity's spiritual health, than her physical condition. The flesh profits nothing, because we walk by His Spirit. We walk by faith, not by sight.
Amen.
Praise be to God.
Jeremy
Charity is right now with the Physical Therapist. There were some ecnouraging movements that she has made today that she hasn't done before.
She pushed with her left leg, which the PT person said she had not felt her entire time here. She also lifted her head up off of her pillow for the first time, in well, I can't remember.
These are positive signs, but we need to keep praying for her spirit, and then her body. The most important thing is always the most important thing. Her walk with Christ is the number one concern that I have for her right now. Keep praying for her spirit and then for her body as well.
I get to talk to the youth group tonight over speaker phone. I am longing just to say that I love them and to challenge them again.
Love to you all.
Jeremy
I've been in Kansas City now for a fifth day. Ministry obligations require me to be away while my daughter Charity has waged some of fiercest battling yet, the emotional/mental/spiritual struggle.
I feel a bit helpless, others have had to battle at Charity's side these days. Her husband Jeremy has valiantly and tirelessly stood at her side never losing site of the Lord nor of hope. Her sister Amee drove herself across many miles to spend several evenings with her. Justin, Charity's brother, cancelled his summer flight school so he could be at her side. In these days he has been one who seems to have especially "gotten through" to her. Her Mom, Sylvia spent two short days away but quickly returned to her side for the evenings. Her sister Heidi is planning to be with her again this week-end. Charity's mother-in-law for many days now has so unselfishly spent nearly every hour taking care of Sofia and Isabella in Rochester so Charity could see them regularly.
And then there is me, Daddy who is supposed to fix things. There were times my kids thought I could fix anything. They brought toys, or other things to me because I could fix them. I was even Doctor Daddy because they thought I could make something feel better or at least try to figure out what was wrong.
This whole saga with Charity's health has really brought out the "Daddy" in me. Althought I gave Charity to Jeremy several years ago, and she is his to take care of, the Daddy in me wants to "'fix her". And together we carry on the battle for Charity's life and health. We never give up. We research things. We look for second, third and fourth opinions. We filter through suggestions, ideas, experiences and advice from many directions. Yet we seem to always come to the same conclusion, "we cannot fix her".
Psalms 39, 44, and 88 mirror my thoughts, "all this happened to us, though we had not forgotten you or been false to your covenant..." There are some recent developments in Charity's case that might indicate things are moving closer to understanding a diagnosis. We don't know. We continue to have hope, but at the same time we accept that God has up to now veiled man's eyes and minds to understand Charity's illness. In the end of all things it will only be God almighty who will be able to "fix her" at His choosing. He may use the doctors to find a diagnosis and treatment, or He may just heal her on His own. If He chooses something other than healing, it will be hard but we'll accept that as well.
This afternoon I'll head back to Rochester for the week-end. I wish I could go to be "Daddy who fixes things", mostly I want to be at her side, love her, encourage her, enjoy being with her and our family again.
We've added another photo album of Charity in her younger days. Click on Photo above.
WE had a meeting today to talk about the plan for the future of Charity's care. I have never needed wisdom from God more than I need it right now. There are choices to be made and huge sacrifices demanded in making those choices, as best I can see right now. I just don't want to make the choices I have to make as a husband, a father and a youth pastor.
We are planning ahead for the day when Charity will leave the Mayo Clinic, as they do not see a definite diagnosis to be made without time. Once she is "medically stable" they can release her BUT TO WHERE? that is the question we face.
Also, Charity IS IMPROVING. that is the DEFINITE conclusion of everyone who works with her. She is just improving slowly. Were she able to meet certain criteria, she could enter into an ACUTE REHAB facility. If she cannot meet that criteria, she will have to settle FOR NOW to go to a SUB ACUTE REHAB faciltiy. I have no idea really what those things look like, and it doesn't seem like anyone here can really give us a solid recommendation unfortunately.
In all of this, I must do what is best for Charity, best for our daugthers, and perform the ministry to which I am called. There is no telling where God is going to lead us at this point, but we have discovered that Madonna in Lincoln has a sub acute rehab option. That may be it for us, but being away from Charity in Holdrege with the girls will present much difficulty.
Anyway, having said all of that, here is what we need prayer for:
1. God's wisdom and continued guidance and leading. We need God to make our way clear.
2. God to do some miracles and for Charity to show incredible signs of improvement in the coming 7-10 days.
3. Continue to pray for Charity's spiritual and emotional health MOST IMPORTANTLY.
4. Pray that the enemy will have no victory, and that Charity WILL BE LEAD BY GOD TO A PLACE OF TRUTH AND ACCEPTANCE of her circumstances.
God has been so wonderful and we continue just to throw ourselves on Him. We have no recourse. Overall today has been another great day. Charity has had some pain and some muscle spasms, but overall showed more improvements today in therapy.
Praise God for a good day. Charity even got out of the room and went with us to the chapel for a while. It is so good for her to get out of this room.
We love you all and miss you.
Jeremy
I arrived in Rochester at 11:00 last eveing and got up at 5:30 to change places with Sylvia. She didn't get much sleep last night.
It was nice to be back with Charity again. The most notable thing I noticed since I last saw her last Sunday was that she could move her right arm at command on her own power. That was significant. Other things seem to be pretty much the same.
She also seems to be under a lot of medication for the muscle cramping. This gives her a more "glazed over" interaction. I hope they can reduce those medications and let her mind be more her own.
I was able to talk some with her about the "next step" in her medical battle, going on to rehab. She seemed responsive to that talk and willing to put her mind and effort into rehab.
We are still working on finding the right place for her after Mayo but want to be sure that move will only be made when she is in deed ready for it.
Today they started a new medication to deal with the muscle cramping. We wanted something that would help the muscles yet not affect her mental clarity.
This afternoon Charity's sister and brother (Heidi and Justin) were with her as well as Jeremy, Sylvia and myself. After the nurse had moved her around she didn't seem well settled and we asked her if she was uncomfortable somewhere. After several attempts to guess what was wrong we got out the gaze board and asked her to spell out a key word to desribe how she was feeling. She spelled out C - O - N - F - U and we finished it as CONFUSED. She reaffirmed that was what she felt.
It seems the accumulation of everything, (the lesion, the medications, the plasma exchange, the long ordeal in the hospital, the spasms, lack of rest, nutrition, the frustration in not being able to communicate) seem to be taking a toll on her ability to keep a clear mind.
Her muscle responses have been good today, but her mental alertness has lagged. Tonight her emotions and responses have been flat. It's been very difficult to get a response. She hasn't laughed since early in the week.
We spent a good while reading Scripture with her in English and in Italian as well as praying with her. She belongs as ever to Him. We do hope and pray that God will bring healing. Pray for a good rest for Charity tonight
This morning I arrived at about 7:30. Sylvia and I spent some time reading the Bible (in italian and english) with Charity and praying. Then Sylvia went to our Rochester place for some sleep.
At about 8:20 the neurologist resident stopped by and I explained the "glazed over", "confused" look in Charity. They will be taking it up as a team today to try and understand it.
One of the possible explanations is that a lesion like this can have an "ebb and flow" even as it goes through a "healing" process. We'll wait further word from them during the day.
Jeremy has an afternoon picnic planned with his daughters, Sofia and Isabella. He hopes to get to church this morning. That would be the first time he's been able to be in church since April 22!
Heidi and I will be leaving Rochester about the same time and travel "in caravan" as far as Des Moines.
Later this week Charity's childhood friend, Sara Mazzucchi from Italy is planning on coming to visit her here in Rochester for a few days.
Pray for the medical consultations today, that the doctors have much wisdom in discerning what's going on, and for peace and patience on our part. It is so hard to be at her side and not know if she is really recognizing you or not.
Charity has had a rather full Sunday morning and noon time and all of us with her this morning see her a lot more responsive and alert than she was last evening, about the same as yesterday morning.
At about 10:00 they took her down for another MRI. She was having some muscle cramps so they weren't able to do one with contrast but were able to get a diagnosically good normal one.
Then when she was wheeled back from MRI we had her put into a medi-chair and took her outside into the inner courtyard. She did so well at that we took her to the other courtyard that also has a fountain. She answered us that she wasn't ready to head back to the room so we took her to see the chapel. It's a lovely catholic chapel, built in Italian style. I think it was actually built by Italians. That pretty well used up her morning and we got her back to her room around 1 pm and ordered some pizza for the rest of us while she got hooked up to her feeding tube again.
She seems to have a clarity of mind to understand her fuzziness of mind, (isn't that a contradiction of terms).
What can she do and not do as of today?
- she still cannot eat, talk, swallow fully.
- for at least 5-6 days she has not smiled or laughed.
- she can still cry, or make a crying noise, but is not nearly as emotional as 5-6 days ago.
- she can move her right arm almost always at will.
- she can shake her head well and usually nod, but sometimes very weakly.
We are grateful for another day with Charity and love her even in the condition she is in.
Please pray for God's leading. We are aiming simply to trust Him and His timing.
Furthermore, just wanted to say that Charity kissed me back today and held my hand on purpose. They were two separate moments that meant SO MUCH to me.
Keep holding us up. The coming days and weeks are going to be intense.
Love all of you
Jeremy
BY THE WAY, THANK YOU FOR ALL YOU HAVE DONE. We have not had need of anything at any time. You all have been so generous and faithful in gifts and in prayer. Thank you for being what the church is called to be. We would and will do the same for you.
We love you.
Jeremy
It's so hard to be away from Charity, Jeremy, Sylvia, Justin, Sofia, Isabella, June and to try concentrate on the things I need to concentrate on here in Kansas City, but I'll make it.
These days over the week-end and since I've been praying one thing, among others, "Lord, help Charity improve that she can smile again." It's been over a week that she hasn't smiled or laughed.
Tonight I got a call from Sylvia that during a time, Jeremy was helping Charity with somethiing in her mouth, she had bit down on it and then he understood that she had done that on purpose. He did it again and she bit down again annd then smiled and laughed. I understand the room erupted in cheers.
She had another MRI today, done with contrast. She also had another plasma exchange. She will do two more. We pray for good enough improvement to give the doctors direction and hope in continuing to treat her.
- Phil
Well, today was awesome for three reasons.
First of all, as I was suctioning Charity's mouth, which by the way, she absolutely loves, she bit down on the suction thingy and wouldn't let go. When I got it out, I of course laughed out loud, but so did she. Her sense of humor is in tact. We haven't seen Charity laugh or smile in over a week. You have to at least try to understand how huge that moment was for us. She smilled and laughed, just like Phil said.
Secondly, I had an amazing conversation today with a male nurse. yeah, they are out there!!! He was a believer as best I could tell. He said some amazing things about God. He talked scientifically about the impossibility of evolution as science books explain it based on 30 years of personal study of the subject wrestling over whether belief in God was for him. He told me some absolutely mind boggling things about the human body and the universe I have never heard about, and I simply said WOW. He then corrected me and said, "Not wow...God."
That got me thinking about mankind's pride in their own knowledge and accomplishments. Why is it that we marvel at mankind's creations and inventions and miss the even greater complexity that God has built into EVERY SINGLE CELL in our bodies? Our God is AWESOME. He took my breath away again today as I sat listening to Ken talk about my God, with the biggest, goofiest smile on my face. God is my joy giver. It seems more and more that the best things in my life have been tainted with sadness because of our recent trials, but the joy that I find in God has simply not faded and has if anything become more brilliant.
Praise God.
Finally, Charity blinked her eyes at me three times tonight. I had just spent about 5 minutes explaining how much I love her. I asked her if she was saying that she loved me back. She nodded yes. You might not understand the number 3, but in our family that number has significance because of something my father once said to my mother. Another time...
Not only that, but Charity's brother said he loved her and her mother told her to say that she loved him. So she mouthed the words. She didn't get the sound out, but hey, SHE MOUTHED THE WORDS. She is regaining much of the necessary control she needs to talk again. Let's just pray that in the face of the best knowledge of men, God would bring back to Charity more than any doctor thought possible. That would be a great demonstration that POWER belongs to our God alone, and His foolishness is wiser than the wisdom of men.
Amen. Thank you God for an AWESOME DAY!!!
I'm away from the action so I can only report on what I get from phone conversations, and it sounds like there has been some real action up in Rochester Minnesota.
Jeremy mentioned to me that Charity had lifted both of her arms during occupational therapy. That's significant. She also continues to show more alertness and emotions.
Charity will have another Plasma Exchange tomorrow (Wednesday) and her final one on Friday. The medical teams will be continually assessing her situation to see if she should stay on at Mayo, if she sould move to a rehab facility, and what type of facility she qualifies to enter.
Jeremy and I would like to go visit some of these places, (probably three of them). In fact I had already purchased some of the tickets when I got a call back from one of them and advised not make a visit until Mayo makes a formal referal request.
I understood from Jeremy that we had also obtained the MRI's done with contrast and that those are/or will be on their way to Barrow Neurosurgical Associates in Phoenix for their review and a final report from them.
I had planned to return to the action this evening and drive up to Rochester but have put that off until the week-end.
-Phil
Charity MOVED ALOT today.
Here is what she did today.
1. She held both arms up by her own strength. Left arm was weaker and would lower slowly BUT UNDER CONTROL.
2. She lifted her right wrist and lowered it on command.
3. She pushed up with her right shoulder and could relax and work on command. This means she is regaining crucial control over some of her muscles.
4. She pushed with both legs really strong with her right and stronger with her left.
5. She pushed the nurse call button on her own this morning...Yeah funny story. the doctor came in to talk to Charity and her mom. All of a sudden the nurses came in and the doctors and Sylvia were like, "Can I help you?" They said that someone had hit the call button... Yup it was Charity.
6. She said HI with no sound. Everything worked exactly correct except she doesn't have the strength yet in her vocal folds to make and control the sound. HUGE.
7. She says through a series of questions that she tries to sit up all the time. She is seriously trying to sit up. That is awesome.
8. she can now move 4 out of 5 fingers on her right hand.
9. she has her voice back. she can now make sound on command (ah sounds)
10. she intentionally put her arm around Sofia and kissed them with her lips.
11. She held a ball with her right hand.
Yeah. Good day.
Love you all.
Jeremy
Keep praying.
Cari amici di Magazzino di Savignano sul Panaro.
Prima di tutto vogliamo ringraziarvi per i vostri atti d'amore, di generosit
Today Jeremy and I have been on the phone alot with each other. We seem to be getting pressure from several directions at once.
- Mayo want to keep the discharge process moving along
- Mayo had not however gotten referals far enough along for Jeremy and I to go visit some of the rehab facilities. So we need to go, but we don't have any go ahead to look where to go.
- The insurance company is calling Mayo and telling them they will not cover any of Charity's hospitalization after May 31. That must be somewhere around $5000 a day.
- We are working with an appeal to the insurance company.
- The medical staff at Mayo has hinted they would like Charity to get out by this Friday!
The doctors at Mayo feel that Charity has made very definite, although slow, progress as a result of the plasma exchange. I understand from Jeremy that the last MRI with contrast indicated that there was no more bleeding in the brain and that the blood present was being absorbed by the body.
The spiritual battle for Charity's mind and emotions is raging. Charity is in a grieving process. She is at a critical place in that process. WE NEED YOU TO PRAY FOR HER to be brought by the Holy Spirit who lives in her to the place of truth and acceptance, where she will experience freedom and peace in God.
Also, we need you to pray for our insurance company. As you have heard they have cut off our insurance effective 05/31. That was a week ago, and we just found out yesterday. We are undergoing an appeal process. Pray that God will change the heart of the doctor on their end that reviews her case. Pray that God will act yet again on that front.
I am doing well, just extremely tired and worn out. Please continue holding us up in prayer.
Jeremy
TOday I got a call from the pre-certification department of our insurance company... Yeah, God did it again. We have been pre-certified through today, and will again be under review for the coming days, which means we have more praying to do, as we are in the process of getting Charity moved to a long=term care facility.
We are most likely going to end up at Madonna in Lincoln, but Phil and I are going to check out Craig Hospital in Denver as well.
WE don't know for certain yet, but we feel like we are going to be moving sometime this week. Please pray for God's continued leading and presence and for unique wisdom that only GOd can provide to wade through all the beuacracy.
I have felt in some unique ways the spiritual battle that is surrounding us. I have woken up praying out loud the name of Jesus. This spiritual battle is real, and it is intense especially for Charity right now as she is fighting through this process of grief. Please remember the battle that all of us are in and that our enemy wants nothing less that to steal, kill and destroy our faith and our lives. Pray that God will not allow our enemies to have any victory over us, and that GOd will keep CHarity and I united and together in our hearts, spirits and minds. I can't stress this enough.
On a lighter note...
Last night Charity and I had a special time with the girls. Sofia was able to comfort Charity through a bout of intense tears. It was as if Sofia wasn't bothered at all. She kept saying, "It's Ok Charity, you are getting better." Charity calmed down and tears turned into laughter as Sofia was just being herself.
Charity and I laughed alot with the Sofia, and I whispered to Charity, "even in this there are happy moments..." She agreed.
That was an awesome thing that was so good for Charity. I really believe God is doing something special in Sofia. She just seems to be ok when mommy cries. Thank you God for that.
I was thinking yesterday about something and in my prayers last night it came out again. It was the simple confession that as we are letting go of our lives as we once knew them, the life that God is giving us is and will be better than anything we could give up. Just a comforting reassurance that God gave me last night after a jog.
Charity has showed improvement AGAIN today during therapy. She has one more plasma exchange today, and then it is just a waiting game for God to make it clear where we are to go next.
I think often of what it will be like to be back home in Holdrege. I miss being there. I miss all of our friends and family there. I can't wait to go to Trinity and just walk in and feel the love that is in that place again.
To the kids in Holdrege...I love you. We love you. We can't wait to see you again.
Soon.
God's mercies have been renewed this morning. Should be a good day.
Jeremy
I left Kansas City for Rochester about 11:30 on Friday. One of our new friends in Rochester, Pam, took Sylvia's turn at Charity's side for the evening. Sylvia and I got away for the evening, had an Italian meal and hid out in a local hotel for the evening.
It was last Sunday since I had last seen Charity and I was glad to see her so much more alert, and her arms able to move quite regularly. She has made definite improvements, even though they measured in very small steps. My sister, brother, his wife and daughter stopped by. It has been mothers day the last time he had seen Charity and noted improvement since then. The steps are so small but when added up over time show progress.
Charity's friend from Italy, Sara, is here. The initial greeting I understand was an emotional experience for Charity, but that has settled down and she seems to genuinely appreciate her childhood friend at her side. At this moment Sara & Charity are playing UNO with Justin and Jeremy. Charity is able to indicate some of the card choices.
It's almost certain Charity will be moving on to a rehab facility this week. A lot of planning, and financing has to be checked out for every step along the way. Jeremy and I have a trip planned to visit a couple of facilities on Tuesday and Wednesday.
It's just nice to be at her side again. Thank you Lord for another day, each day of life is such a special privilege.
Today I have been complaining and I am disgusted with that brokenness in my soul. Please just pray that God will give me victory over anything in me that wants to complain in this place God has brought us. I rejoice in my brokenness because it reminds me that Jesus' grace is sufficient for my shortcomings. It give center stage to His glorious grace and removes me and my shortcomings from the picture entirely.
I want to know Christ. I want to love Him more than anything. I want my life to be a testimony to His glory, that He would be greatly magnified in it. I want these things for our marriage, and our children as well. Complaining has no part in these things.
Charity continues to improve. She just moved her toe. That is significant. She couldn't do that yesterday. She is still struggling spiritually and emotionally, as anyone would in her position, but we can still pray for God's continued work in her life. She is laughing more than she is crying these days though. Please keep interceding for her in this spiritual battle. This is the most significant part of this whole process. Let us give precedence to the spiritual reality without neglecting to pray for CHarity's physical healing.
Love you all.
Jeremy
I got to go to church today. It was good to worship Jesus today with a costly sacrifice of praise. It gives me joy to offer those most precious to me with open hands to Jesus.
Another something has been impressed upon me that I need prayer for. It has to do with our children. It is difficult to discipline Sofia in and through all of this. THat takes a tremendous amount of emotional energy to do. I don't want to harm Sofia, by not disciplining her. I need the grace of God specifically in this area. Please pray for me in that.
Please also pray that Sofia and Isabella, will Know Christ, love Him above all else and follow Him without reservation. I am so concerned for them spiritually, as the enemy I am sure is and will attempt to use this to their harm.
It was just good however to be in church. Worship welled up in me from the depths of my soul. I so badly wanted to go forward and just exhort the church to place their hope entirely in knowing, loving and following Christ in life and looking forward to being with Him where He is in death. I feel as though God is answering my deepest desires in and through this trial. It is just in a way that I in my limitations would not have chosen. But God in His wisdom has chosen this for us, and I remain submissive to His will and purpose for our lives. May He greatly magnify His name in Christ and in us, His bride.
Amen.
Hey all,
Thank again for your prayers, I have people tell me all the time they check this place every few hours. Awesome.
So charity was getting her mouth cleaned today, when a nurse apparently used too much mouthwash like stuff. Since her throat muscles aren't working very well yet, it travled to her lungs and she started coughing really bad, all kinds of doctors rushed to help her out, and they used suction to clean out her lungs, but apparently something else (something unknown) had been set into motion because she was contining to have a hard time breathing and her oxygen was dropping.
They've now transfered her to Intensive Care in a different building. Its all happened in the last hour, so I have no idea what the exact details are, but I just wanted to throw this out as a prayer request. I'm sure she's really scared. Thanks for your prayers.
Just when Charity was turning a corner and ready for rehab...
Just when she was looking so much better...
Just when her brother Justin was ready to start his flying lessons...
Just when we thought we had plans set in place for the next step...
Just when we thought we had already passed through about the deepest waters we could ever pass through ...
...Charity's saga took another unusual turn.
This afternoon I was with Charity, just before I was to return to Kansas City. The nurse came in and did their usual mouth swab to freshen her mouth and treat it since she doesn't eat they need to keep it attended to. There is always a bit a liquid with this swabbing proceedure. Charity was swallowing some of this liquid, and it looked like she was doing a good job, almost like she was getting back her ability to swallow. However after a bit she began to cough, and have trouble breathing. They attended to her, giving her oxygen and then suctioning her lungs. Her breathing was irregular and her heart rate raced and blood pressure went down.
They took her quickly to ICU to stabilize her. They put her on a breathing machine, then inserted a breathing tube and did a CT scan of her chest and head.
This was so hard for us to take.
Then we got the report on the CT scan. There is not clot in the lungs. The scan of the head shows that the lesion has NOT grown. There is some darkness in the lower part of the lungs. So they see some pnemonia. But it is very unlikely that this is neurologically provoked for which we are very relieved.
I canceled my return to Kansas City for today and we don't know where our plans for discharge are going. As the verses we've read recently in Isaiah, the ways of the Lord are beyond our understanding.
Please pray. I have just endured something that I never want to endure again. Charity was rushed to ICU (the intensive care unit) due to difficulty (severe) breathing.
Apparently no one knows (go figure) why this has happened. I has nothing to do with the lesion in her brain stem, however. There has been no new bleeding. that is the good news.
Charity most likely has pneumonia. that is an infection of the lungs due to secretions that have gone down her throat due to being in bed. There is no evidence of a blood clot. That is also good. Clots and new bleeding would certainly mean more damage.
We prayed over her. Sang over her. Jesus has walked us through faithfully thus far and we are not leaving Him, as He gives us grace and strength.
She is stablizing. Not completely stable. She is on a breathing machine, but is breathing on her own, with a little help to make sure the air gets to her lungs.
My prayer is for Charity to be full of God's Holy Spirit and that Jesus will speak to her in the depths of her soul and lead her out of this. Please pray in the same way.
Pray also for the girls. Sofia is aware of everything that is happening. She doesn't comprehend it fully, but she knows something is happening and that something needs to be done to help mommy. Pray that God will protect her little soul and heart and mind from harm. Please pray the same for Isabella.
Submissive the will of the Father in Christ Jesus...
Jeremy
Can it be just 54 days since Charity's first symptoms? On the other hand it seems like months, years, maybe decades have slipped away.
Today Charity is till in the Critical Care facily of Mayo, St. Mary's Hospital, (Mary Brigh building, floor 8 room 730).
The Critical Care team (at least a dozen) saw her around 8 this morning. They understand the situation, but not necessarily the cause.
The long hosptilalization has probably caused "stuff" to get into her lungs because of her difficulty coughing and swallowing. Stuff just goes into the lungs instead of down the throat.
Yesterday her heart beat was racing between 120-145 and her blood pressure was low. This morning when I came in her heart was at her normal abour 50-60 and blood pressure was up. But just before the medical team came in it had dropped to the low 40's and blood pressure down as well.
They are working to:
- stabilize her heart rate and pressure. They will do some cardiac investigations.
- stabilize her breathing so the oxygen levels in her blood improve. They have her on a breathing tube. This may stay all day today.
They sedate her quite a bit because of the discomfort of the breathing tube, but even though she is "out" she still hears and understands us and even will cry at times.
Jeremy and I were going to visit some rehab facilities tomorrow. We have cancelled that trip and I have tried to recover as much as possible from the airlines. Some were more generous than others.
Justin is doing a good job of encouraging his sister. We thank God so much for his special "connection" with her. Jeremy is such a perseverant, faithful, God honoring husband.
Well. Let's see. We are going to be here for at least one more week.
Charity should recover from this episode. She has pneumonia. Everyone seems extremely expectant that she will recover from this infection, but steps need to be taken to prevent in the future. They are going to insert a breathing tube primarily to reduce risk of repeat infection.
That will happen this thursday. She will remain in the ICU until then and a couple of days after that. As it looks right now, she will then be transferred to a long term care facility (acute rehab) in Lincoln (Madonna).
As you all might imagine, this comes at a time when we are all very worn out emotionally, spiritually and physically. We need your prayer support and intercession more than we needed it yesterday and the days before.
I can't think of one thing in this life that is certain at this point. There is nothing in this life that I can count on for tomorrow. All we have is Jesus. THE question that we are faced with every moment of every day is, "Is He enough?" YES. Where esle can we go. He has the words of life.
I am most concerned today abotu Sofia and Isabella. They are being moved around so much, and I fear the harm the enemy most certainly wants to inflict upon their lives. PLEASE INTERCEDE FOR THEM, that they would Know Christ, Love Him more than anything, and follow Him without reservation. This has become my prayer for them.
I have to decide whether or not to send them back with Matt and Lori. My heart screams to keep them here. I just don't know if that is best for them. I need God's wisdom and peace.
Jeremy
Charity's "numbers" have been quite good today, (blood pressure, heart rate, oxygen etc.) They have her under excellent care. Little by little they are weaning her off some of the medications.
Pam brought us all a meal this evening, what a blessing. I think it was Jeremy's second home cooked meal in the last 49 days of hospital life.
We usually try to have one family member stay the night with Charity. That's a committment we made and saw to be very important when we moved her to Mayo. I think we are all so emotionally and physically drained that we are all going to go home tonight and sleep. I don't think we have any "rested soldiers" among us. They have constant care in the Critical Care Unit and they have Charity under sedation as well, so there is not a whole lot we can do even if we would stay.
Charity's Italian friend Sara left this afternoon at about 5:00. She ended up adding a very special "touch" for Charity's stay here. She did a lot of reading the Bible to Charity in Italian and re-telling stories from their childhood.
Isaiah 40:29 says, "He gives strength to the weary and increases the power of the weak."
This verse seems to especially speak to the needs of Charity, Jeremy, Sylvia and all of us right now.
The Critical Care team, headed by Dr. Keegan, visited Charity at 7:45 this morning. I'm the early one in the family so I was up here at 7:00
Their assessment is as follows:
1. Charity has improved in the time she has been here in Critical Care.
2. Overall her vital signs are good. Her heart rate is quite low but that may not be a big factor.
3. They want to see her breathing stronger. Here is where she needs the Lord's promise, "He...increases the power of the weak". If she can become strong enough on her own power she may not need the trachea tube.
4. She needs stronger coughs. Right now with the breathing tube in her mouth/throat that's a pretty difficult thing to do. They may try removing it later this week and see how she does.
5. They are going to have her checked by a Cardiologist today to see if the low heart beat is anything to be concerned about. Again here is another area she needs the Lord's power to... "increase the power of the weak." If they determine her heart is working well they will not put in a pacemaker, otherwise they may consider that.
Today they hope to get her up out of bed, get her in motion and help the lungs and body strengthen. Pray that God strengthen that body of hers and also give her a strengthened determination to cooperate and work toward an increase in strength.
For those of you that don
Today has been a good day. Charity and I had an amazing few moments of connecting this morning on spiritual matters. She agreed that being with Jesus in heaven is MUCH better than being with her girls. That is a HUGE thing. She agreed also that her suffering, as it is for the sake of Christ, is a badge of honor that she wears as a true disciple of Jesus. I wish I could tell you the context of that conversation, but it would take many more words than I am prepared to write. She seems to be in a good place spiritually, and I can't tell you how refreshed I feel.
She seems to be softer and more open to the spiritual realities that engulf her. Thank you for praying, but now is the time to really pray for her and intercede for her. She is turning a corner we believe, but she will have many more ups and downs along the way spiritually.
Physically she is improving and still moving around. She will have the breathing tube removed tomorrow out of her mouth and another will be placed in her Trachea, MAINLY to PREVENT this from happening in the future. She will remain in ICU for a couple more days and LORD WILLING she will be moved back downstairs.
I don't see any sign that this will disrupt the plan to move her to Madonna in Lincoln. If anything, she will be safer and it will be easier for the nurses and doctors to focus on rehab without concern of complications.
God is Good. Still. He hasn't changed. I have had some amazing opportunities today just to talk about God with people and my heart simply rejoices in those moments. I want so badly just to proclaim God, but it seems that though I have opportunity on occasion, God is teaching me and stretching me, and calling me to radical discipleship. I rejoice in that, and I am willing to obey His call on my life. May His will be done, and may He be greatly magnified in my life, and our lives.
Continue to pray for Sofia and Isabella spiritually, that they would know Christ, love Him more than anything, and follow HIm without reservation. Pray that Charity and I will set a godly example of those things for them to pattern their lives after.
Charity, every time she looks at those pictures is praying for Sofia and Isabella. Pray that Charity will see her role in the girls lives as unchanged in that regard, to care for them spiritually by interceding for them.
I miss Sofia and Isabella more than I can say right now. Pray that they will in no way feel abandoned. Pray that this will be for their spiritual good as I am trusting it is.
I love you all.
jeremy
Tuesday night this week, Justin and I arrived back in Kansas City. He has started his flying lessons and I am finishing the retreat for next week that Sylvia and I are responsible for.
Once again I'm on the sidelines and often have to wait myself to see updates posted here on these internet sites. Calling by phone to the ICU floor is limited because they can't answer cell phones in the unit. So we wait until they have a free moment to exit and give a call.
I do know a couple hours ago Charity was on her way to get the tracheostomy tube inserted.
One of Sylvia's college roomates would like to organize a Prayer Chain for Charity. If you would like to join, contact Lynn Fox at the address below and she'll assign you a time slot. Below is a message she sent us.
All of us as a family have been greatly encouraged by Charity's spiritual and emotional victories in these last two days. This is as great a battle as the overwhelming physical hurdles she faces. We long so deeply to have her well and restored physically, but even more we all long to have her at peace with God in her struggles to reckon with the devastating losses she is currently living in. Send Lynn an email if you would like to join.
- Phil
---note from Lynn----
I would like to organize a 24/7 Prayer Chain for Charity & her family. I strongly believe that prayer is where this battle will be won. If anyone is interested in taking 15 minutes or more, please email me with your time & the time zone you are in. lynn@foxfpm.com
I understand that last night Jeremy and Sylvia had a run in with some of the doctors. We as a family don't claim to be doctors but we do observe every change in Charity's disposition or health.
We have observed that the steroid treatments for the present seem to be holding the swelling and neurological deficits at bay. Every time they have reduced or taken Charity off the steroids she has taken a downturn. We realize this is only treating the symptoms but that's important in her case and we hope that the real cause will be discovered, treated or healed in time.
Last evening Sylvia discovered they had reduced her steroids in half. In the middle of the night they went to the hospital and appealed to get them reinstated. This may have put them at odds with the doctors caring for her. Pray for wisdom for Jeremy and Sylvia as they deal with the medical professionals.
I will return to Rochester this afternoon and stay for the week-end.
Again if you wish to join a Prayer Chain for Charity contact Lynn mailto:lynn@foxfpm.com or get the information in the LINKS section of this site.
-Phil
As you heard from Phil, the doctors here have made some decisions, potentially life altering changes for Charity and our family without our consent or knowledge.
I am appealing to you to pray for us now. I am so angry, but my heart wants so badly to forgive and be gracious.
We have noticed a change in Charity. It seems like she is distant and unresponsive again. I asked her if she could move her right arm this morning and she nodded no. I cannot be certain that is the result of the doctors' decision to reduce her steroids, or as a result of mind numbing anti depressants. We don't know right now.
I don't know how to feel. Just pleasel pray that Charity has not lost ground in terms of her abilities she has regained. Please pray that it is simply the anti depressant they have her on.
God doesn't need steroids or anti depressants to heal a person. Our hope is not in these fallible doctors, highly intelligent though they be. Please pray that Charity will know Christ, love Him more than anything and follow HIm without reservation even in this. Pray the same for me.
Pray that our conference with the doctors would display the grace of God, and that Charity's recover would simply continue to progress.
So the path takes another turn, unexpected and frightening. Lead us on LORD Jesus.
Humbly...
Jeremy
We are moving back to a regular room right now. She is stable medically, but we fear she has lost what she has gained in the last couple of weeks. It looks that way right now, but we just keep trusting God and praying.
A prayer request of a different type. I just met a young lady named Nicole whose husband of two years has bacterial menangitis. Daren and I prayed with and for her and her husband John. Pray that God would not only surround us with His love but them especially. Not sure where they are at spiritually, but she is STRUGGLING. As her husband was and is in the ICU, her mother in law, John's mother was admitted with a heart attack the same day. Please pray for this couple and their family as you remember us in your prayers.
God is at work all around us. Let us pay attention not just to our own suffering, but to that of others around us and seek to shine God's light there as well.
Love to you all from Charity and I.
Jeremy
I pulled into St. Mary's hospital about 50 minutes ago, just as they were getting Charity ready to move to the regular floor. I greeted her and gave her greetings from her brother Justin who was probably up flying on his third flight lesson.
Charity is somewhat subdued but I haven't had enough time with her to make many of my own observations. Jeremy and Sylvia have definitely been through another one of those emotional roller coasters. I'm very glad I made the decision to come earlier.
As I drove I had the opportunity to listen to several message "podcasts" I had downloaded last night. Several by Woodward Krowell of Back to the Bible on the first chapter of Job. Another couple others by Ravi Zacharias also on Job.
We hope to have a conference with some of the medical personnel tomorrow to have them help us understand Charity's situation, steroids, and other medications. We don't want to be making medical decisions that Doctors should make, but we want to know and understand what they are doing, or plan to do. We have followed her for fifty days so while we aren't doctors we do have a very intimate knowledge of her medical history.
Well, we are back in the room we started in when we first arrived at Mayo.
Difficult Day to say the least.
Things right now are calm, and charity is being settled into bed as I am writing this.
I am so thankful for our HOPE in Jesus. Truly, He alone is sustaining us. His presence is literally my life. Not being aware of His presence is death, because He never leaves us when we cease to be aware of Him.
Charity, even in her clouded mind, agreed with me by nodding when I reminded her that nothing that truly matters has changed. We have been given eternal pleasures in Jesus' presence. We love each other. We love our girls more than our own lives.
There simply aren't words to say how badly we miss Sofia and Isabella.
Following Jesus has for a time separated us from them, and we will continue to follow Jesus, even as our hearts shatter.
Please pray that God will continue to give us grace and strength. His presence is the strength of my heart.
Jeremy
I love you more than my life. Mommy and Daddy miss you so much. Don't worry, your daddy will come for you soon, Lord willing. Don't forget that I am your prince, and you are my darling princesses who daddy loves completely.
Sofia, when I am with you it is so magical. Like when you and I sat and told the bears to go away and watched the deer that came to see us.
Mommy and Daddy want you both to love Jesus more than anyone or anything. He loves you the most. He keeps His promises the best. He will never leave you so trust Him like mommy and daddy do.
Never forget that mommy and daddy don't want to be away from you. We want to be with you SO MUCH!!! Never forget that we love you more than anything on this earth. You are both so precious to us.
We love you SO MUCH.
Jeremy
Charity slept well last night. 5-6 hours without a sleep aid medication. That is a good thing. We are about to meet with the doctors that have followed Charity's case and know her the best. We are going to discuss the best laid plan that humans can make, and make some big decisions over the coming days.
We still need God's wisdom.
Charity was responding very positvely this morning about things that matter most. I told her that we are going to set a godly example for Sofia and Isabella and she nodded "yes". I told her that we are going to teach our girls how to love God more than anything and she nodded "yes."
After what we have been through the last couple of days, this is nothing short of a miracle. God's grace is winning out in our lives. Praise Him!
I feel refreshed and renewed this morning. I took some Tylenol PM last night, and let me tell you something, that stuff works...I am pretty sure that Daren and I were laughing harder than we ever have before I fell asleep.
I went out like a light and didn't wake up until 9am. It felt really good to sleep in.
Gotta Go.
Love you all very much.
Jeremy
Thanks so much to Jeana Popple who stayed the night with Charity on her first night back in room D2-326. The same room Charity was admitted to back on May 9.
It's 10:40, Sylvia, myself and Jeremy are here together with Charity. We are waiting for the doctor rounds and we hope a conference with Dr. Joseph's, the lead neurologist currently on Charity's case. We have a lot of questions to ask him to help us understand steroids, medications, where Charity is neurologically, physically, mentally etc. etc.
Charity seems to be very much like she was two weeks ago when she was so FLAT emotionally. (if you check the journal back then you can read how we were so concerned). Her movements with her arms seem to be more limited today. We aren't sure why.
Charity seems to be mentally alert but not as responsive. She seems more distant. As we went through some of the greetings that you all have written her, she was actually reading the greetings herself. When she would get to the bottom of the page she would lift her thumb and I would scroll down some more.
Every day of life is special and we pray that the days of life ahead for Charity will be ones where she can know and understand God's love for her, our love for her.
-Phil
Today at 11:30 Dr. Josephs stopped by and we had a good long visit with him about steroids, the lesion, heart functions, the respiratory problems Charity had etc.
Over the 54 days Charity has been in the hospital we have almost always seen positive progress when she has been on a consistent steroid treatment and detrimental response when those have been reduced, stopped or reduced too quickly.
Steroids do have significant side effects if used over the long term. Two months is not considered long term yet. Steroids can also actually reduce muscle strength. They can increase muscle strength for a time but then can also reach a point where they start decreasing strength. There doesn't seem to be an exact way to know which is helping and which is being negative. The main thing is just to observe, and the best observations are those from the family itself.
So we have some decisions to make. Dr. Josephs has returned Charity to her normal 4 mg steroid treatment every six hours. We need to decide if we want that continued or not.
It seems Charity is physically and medically stable, but she'll be observed over the next few days to see how she is and how the transfer to Lincoln will take place.
Just a few moments ago, as i was writing this, Charity complained of pain and was trying to cry. That's good to see the emotional response. We hope we can see some laughing and smiling next.
It hasn't been a bad day, but not a day with phenomenal new things. It's been a day we have persevered and looked for ways to encourage Charity. She has shown greater alertness during the day, toward evening now she's been getting tired and not so responsive. We have gotten some smiles from her, responses to questions. She has followed our discussions on steroids and our prayer time as a family asking God for wisdom to know what we should decide about further steroid treatments.
We wish Charity showed better arm movements like she had earlier this week but that may come back again with time. She seems to have always fought back with these small bumps along the way.
This evening I was reading one of the greetings left on one of Charity's sites. The question was whether Charity during her "distant" times was able to be still and wait on the Lord. I asked Charity that question and she responded positively nodding her head that she did.
Today has been a good day. Charity is in from what I can tell an awesome place spiritually. She has agreed with some tough truths and just seems to acknowledge God in and through everything she has been through in the last week. She is a true disciple of Jesus. She is persevering under tremendous trial. Her faith is being proved genuine. I praise God for that!
Some encouraging news.
Today Charity has been able to communicate with head nods, she has moved her left arm intentionally 5-7 times. She kisses me back, and moved her right thumb and arm. The thumb she can move on command still and she also responds by nodding in timely and appropriate ways.
She is definitely more alert. We are so thankful and relieved to see this movement as you might imagine.
Thank you God for another day of life with Charity. Thank you that the quality of being with her hasn't changed. She brings joy to my heart, just being with her. She is an amazing woman, and that is all Your fault. You, God are amazing...
We love all of you.
jeremy
Sofia & Isabella,
I remember sitting in our living room in Wilmington, DE thinking. Suddenly, a series of thoughts rushed through my mind and I immediately began to write things down as fast as I could think them.
Do you know who I was thinking about? You. I was dreaming about being a daddy and how I wanted to be able to honestly say that I loved you both before you were born.
I wrote you both a letter expressing my love for you both and desire to teach you how to follow Jesus. I wanted to be like Jesus, who loved us before we were born, before the earth was made and everything in it.
I love you both so much. Lord willing I will come for you soon. I long to be with you, like Jesus longs to be with us. He too will come and take us all home to be with Him someday, so love Jesus Sofia and Isabella. Love Him more than anyone, because He loves you more than anyone.
Your Daddy Forever...
YOu both are in my thoughts today because I am your daddy. I love you both so much.
I just wanted to tell you about your mommy. Your mommy is a true disciple of Jesus. She is the bravest woman I have ever met. She knows Jesus. She loves Jesus. She is following Him through so much. I just want you to know that your mom is the best woman I have ever known. She is the best mommy in the world, and she loves you both so much. She tells me that all the time. She wants to set you an example of what it means to be a godly woman. She wants to show you how to love Jesus more than anything. Jesus is so proud of her. He dances over her with singing. Yep, that's right Jesus loves to dance just like you! He wants to dance with you and for you to dance for Him. So dance.
Don't forget, I am sending you a present in the mail for you tomorrow, so it should be there in a couple of days.
I love you so much!!!
Daddy
I need your prayer today. I am really struggling emotionally. Tears flow easily as I think of Charity and the girls. My heart is just breaking under the weight of this cross. I want to bear it in a manner worthy of my Lord.
Jesus you are worthy of this sacrifice. You are worthy of so much more. I offer you my broken heart and my tears. May You be pleased with them. I look to You alone for deliverance. There is none but in You.
Jeremy
Today is the 55th day Charity has been in the hospital. It was with heavy heart that 2:00pm rolled around today and it was time for me to make the six hour trip back to Kansas City. Today was especially hard because this week-end was not peaceful on the medical side of things, and I hated to leave Sylvia and Jeremy alone with Charity. But they weren't. Jeremy and Charity's good friends Darin and Jeanna are staying on and Jeanna will stay the night with Charity.
This week-end I observed Charity struggling to keep an attentive responsiveness to those around her. There were some moments where she responded quite well and even a few smiles on Saturday. Today she was quite alert early in the morning but most of the day not too responsive, maybe a bit better after naps.
Also Charity has not been moving much today. About all she is moving is shaking her head, some nods, her thumb and some involuntary spasms of her arms.
She has been back on the normal 4 mg every six hour steroids now for 48 hours.
No one is really sure what has caused this regression. One thought is the aspirative event that started last Sunday had such an impact on her body. Another is the quick changes in steroids. It's possible the lesion on her brain stem has changed but most of the doctors feel that is unlikely.
Everything will have to be re-evaluated for her move to Lincoln. We aren't sure how to even make plans. Lord willing here is how we plan this week. I will be in KC for the retreat for our missionaries. Justin will drive to Rochester on Tuesday to be there with Jeremy and Charity until Thursday. Wednesday we plan for Sylvia to fly to KC to join the retreat. Darin and Jeanna will stay possibly until Friday. Friday after the retreat Sylvia and I will return to Rochester. In our thinking a move to Lincoln for Charity could take place around the 25th, but many factors could change that quickly.
-Phil
Today is the 55th day Charity has been in the hospital. It was with heavy heart that 2:00pm rolled around today and it was time for me to make the six hour trip back to Kansas City. Today was especially hard because this week-end was not peaceful on the medical side of things, and I hated to leave Sylvia and Jeremy alone with Charity. But they weren't. Jeremy and Charity's good friends Darin and Jeanna are staying on and Jeanna will stay the night with Charity.
This week-end I observed Charity struggling to keep an attentive responsiveness to those around her. There were some moments where she responded quite well and even a few smiles on Saturday. Today she was quite alert early in the morning but most of the day not too responsive, maybe a bit better after naps.
Also Charity has not been moving much today. About all she is moving is shaking her head, some nods, her thumb and some involuntary spasms of her arms.
She has been back on the normal 4 mg every six hour steroids now for 48 hours.
No one is really sure what has caused this regression. One thought is the aspirative event that started last Sunday had such an impact on her body. Another is the quick changes in steroids. It's possible the lesion on her brain stem has changed but most of the doctors feel that is unlikely.
Everything will have to be re-evaluated for her move to Lincoln. We aren't sure how to even make plans. Lord willing here is how we plan this week. I will be in KC for the retreat for our missionaries. Justin will drive to Rochester on Tuesday to be there with Jeremy and Charity until Thursday. Wednesday we plan for Sylvia to fly to KC to join the retreat. Darin and Jeanna will stay possibly until Friday. Friday after the retreat Sylvia and I will return to Rochester. In our thinking a move to Lincoln for Charity could take place around the 25th, but many factors could change that quickly.
-Phil
Today has been a better day. Charity has been sitting up for 3 hours in a chair and really doesn't want to get back in bed. She has moved her left arm ON PURPOSE, and her right arm as well. She is moving her head very well and is able to communicate again reliably with nods.
She also pushed with her right leg against the stretching that I was doing on her right leg, and also did that with the left leg for the physical therapist. She also moved fingers on her left hand slightly.
So what does that mean? I don't know. She is improving with the higher dose of steriods that she will be on until tomorrow. She will continue at the same level she was on before the "TAPERING EPISODE."
There is a prayer request I have with this plan of action. Steroids with long term use has alot of differnt kinds of side effects.
1. Pray that God will protect her miraculously from those side effects. I could list them, but there are many, and some are worse than others.
2. Pray that WHEN the TAPERING from steroids does occur, that it will be done GRADUALLY and that Charity's body will be able to produce the necessary natural chemicals to compensate for the tapering. The body ceases to produce those when they are being given pharmaceutically, and then begins again as the dependency lessens through the tapering. If you don't understand what I just said, God does. So just pray.
3. Pray that over the next few days we see Charity get back to where she was. That would take a miracle, but I believe God can do anything in accordance with His will. Please only pray this for God's glory and in Jesus' name.
Charity is breathing awesome and has even tried to mouth words to us again today. She is bright eyed and very capable of following conversation. That is awesome.
I am not sure what to even think about expecting for the future, but that is in God's hands. Pray that we will stay positive in the face of what we are hearing from the doctors.
God, show Your supremacy over the pride and achievement of mankind. Do this Lord for Your own glory. We desire Your glory because we love You. Minister to Charity's spirit by Your Holy Spirit who lives in her. May she come to know You in unspeakable ways and find You to be the God of gladness and joy. May her peace come only from Your presence.
In Jesus Name
Amen.
Love you all.
Jeremy
Well, today has been okay so far. However, Charity has been having very strong spasms in her muscles. THat is most likely due to the high dosage of steroids that she is on. Today is her last day of that dose, but will continue the decadron over the next month most likely.
Charity didn't sleep last night AT ALL. Her spasms are just so strong and painful. I would appreciate prayers that God might give her the ability to rest today and sleep tonight.
Please also pray that we might see good improvements over the next couple of days.
More to come...
Jeremy
Charity will be receiving a 5 day dose of 1 gram of steroids a day. They said that if she is going to be doing 3 days, we might as well do five. We may see some added benefit, but I am concerned about those "worse" kind of side effects. Please pray that God would protect her from those.
Also, it looks like they are posturing to get her transferred to Lincoln by this Thursday. No specifics on that yet, but we constantly have our ear to the ground and what we hear is that apparently that is the plan as of right now.
If that happens, we need APPROPRIATE transportation this time. Please pray for that.
Also we need wisdom with how to move everyone and everything and to where. Please pray that God will supply that in abundance.
Charity is still having very strong spasms and her catheter has to be replaced and is currently being replaced and as you might imagine, that is just miserable. Please pray that Charity and I will persevere with a right attitude.
Thanks for all the love and prayers.
Jeremy
In 2005 I began a project to put together video clips and photos for each of our children. I began with Charity's and for some reason didn't go any farther. This is an incomplete job but might be of interest to some people. Click on this link, or go to the Links menu.
http://homepage.mac.com/philandsyl/iMovieTheater51.html
-Phil
I'm not on site in Rochester but I'll try to review from my perspective what's happened in Rochester the last 24 hours. Jeremy may add a note of his own in the next few hours.
1. Charity continues to do quite poorly. Those with her note the following.
- She is not very responsive at all to those around her.
- She seems to still have a lot of muscle spasms, some of them showing as shaking.
- She has not slept in the last 48 hours even though medications are used. She doesn't close her eyes.
2. Jeremy has carried on a long a difficult struggle with the insurance company to get coverage for Charity's transfer to Lincoln. The company wants all kind of medical records, to try and determine a pre-existing condition. To save their $4000 they will hold her more days and possibly spend $21,000.
4. Jeanna Popple has done a exceedingly gracious act of love and perseverance staying with Charity for so many nights. It can't but be taking a toll on her.
5. Jeanna's help and Justin going to Rochester made it possible for Sylvia to fly out of Rochester and join me today at the retreat we are holding for our 65 missionaries and kids.
6. Justin will stay overnight tonight with Charity. He said this evening she was the slightest bit more attentive and had looked at people. He will drive back to Kansas City on Thursday.
7. Sylvia and I will drive back to Rochester or wherever Charity might be on Friday.
A phrase from the message today at our retreat comes from Rev 3:8 "I know that you have little strength, yet you have kept my word and have not denied my name." I can see this applying to Charity today. Her strength has been so totally drained from her body. In all this I have great confidence and reassurance that she has kept God's Word and not denied the name of the Savior.
-Phil
Well I have no idea what the next several hours hold for us here. I am not sure if we are leaving today. Insurance companies don't make any sense to me. I guess we'll see what God has for us today.
Last night Charity's heart rate was up to 160, but her blood pressure looked great, and her oxygenation looked superb. This morning it read 142, and I asked if we should be doing something about that, cause it doesn't seem to be a good thing for someone's heart rate to be that high. They checked it manually and it read 96. So all that being said, I think that for one reason or another, Charity's heart rate is running high, but not as bad as the little machine said. I am very thankful for that.
Charity still remains unresponsive. She looks scared to me. I can't imagine what she must be dealing with inside of her own mind. Please pray that God would just speak peace to her mind and heart.
Not sure why she is so unresponsive. I don't seem to be able to get a straight answer on what IS causing the unresponsiveness. I need God's wisdom to ask if we should have her rescanned to see if there is any neurological change.
We want what God wants. I don't know what He wants, so we are waiting for Him to make the way. I am longing to be home again, but I submit to God if He doesn't want me to go home yet. Pray that God would keep us if He wants to keep us here, and that He would make the way for us to go if He wants us to go.
Jeremy
Charity id doing better on the heart rate thing. Apparently, they switched her from oxygen to room air, and her body wasn't absorbing the appropriate amount of oxygen, so her heart rate went up.
I explained that as best I could.
Charity had a cat scan of her brain today, and it showed no change in the lesion has not changed. that is good news. It also showed that the blood is gone. Completely. That means the affected area is healing. It doesn't mean all the symptoms we are seeing are going to go away, but the brain is healing in the normal process of healing.
Charity is a bit more alert today. In the past three days, she has gotten a total of 5 hours sleep due to the high dose steroids she is on. Her sleep should improve since today is the last day of high dose steroids.
She will go back on the decadron at the usual dose and hopefully we will see improvement in the coming days. Please pray for that.
We probably won't move until monday as things are right now, but if there is any change I will let you all know.
A THOUGHT
I think sometimes in moments of desperation we cry out "all I have is God" as though He were some sort of last resort. As if we were lamenting the fact that everything we really care about is gone, and we are left only with God.
He is not the last resort in desperate times. He is the first resort. And when things are right in the world and I am happy as can be, He is the first resort. this thought has exposed the innapropriate love we have for this world and the good things God gives us.
Remember Your First Love. He IS ALL YOU HAVE. Everything good that we enjoy in this life is from Him. He does not give us good things so that we will fall in love with the things that He gives us, but He gives us those things so that we would KNOW Him and LOVE HIM above everything in this world. Paradoxically, He allows those things to be taken for the same reasons. WHAT AN AWESOME GOD WE KNOW, LOVE and FOLLOW!
There is a breach with everything in this world that occurs when someone, by the grace of Jesus' calling, follows Him in the path of discipleship. Our hope is in Jesus ALONE. There is nothing on earth more precious, more valuable, more worthwhile, more anything than Him. so in the words of Martin Luther,
"let good and kindred go,
this mortal life also,
His Kingdom is FOREVER."
Amen
Love to you all
Jeremy
This morning I walked in to see Charity and she was ALERT and COMMUNICATING VERY CLEARLY.
She gave me the strongest push yet with her right arm. She moved NOT ONLY HER RIGHT THUMB, but her LEFT THUMB. She is SMILING...I mean showing her teeth smiling. She is in a clear mind. She also pushed with her right leg again.
It is as if she is back where she was before the ICU. Only in some ways, BETTER. OVERNIGHT.
God, thank you for these improvements. Use them for YOUR GLORY. Allow Charity's life to magnify Your Name, and Your strength in her weakness. You are the God who chooses the weak things of the this world to shame the strong. Magnify Your Name among the nations through our testimony. Do not let our enemies triumph over us. Grant us the grace to be witnesses and proclaimers of Your mighty Name. Grant us the grace to remain steadfast for Your Name's sake, and for the sake of Your Bride. We delight in You. We delight in all that is Yours.
Allow Sofia's and Isabella's lives to magnify Your name. Draw them Father to You, because we know that no one comes to You unless You draw them. May Your calling on their lives be irresistable. May You be their obsession. May they be consumed with love for You. May they Know You, Jesus, the Supreme God, and love You more than anything or anyone on earth, and may they follow You, Jesus without reservation.
In Jesus' Name.
Amen
Jeremy
Charity continues to impress people with regained movement. She is communicating so well, and is able to move most everything she was able to move prior to the tapering incident in the ICU.
Anyway, the new good news is that Charity, Lord willing will be flying to Lincoln this monday. She communicated that she was excited to get out of Mayo, and start working in rehab. Insurance finally came through and we are set to go if God allows.
Pray that God would use this weekend to minister to those around us who are hurting. Pray that God would opwn doors into peoples' lives.
Thank you all so much for all your support and prayers. Keep them up. We keep fighting for you.
Love you all.
Jeremy
Today I was communicating with Charity using a gaze board. You all probably don't know what that is, but that is ok. All you need to know is that Charity spelled out a sentence for me. That sentence was "Who am I?"
I asked Charity if we had the same last name, and she nodded "yes." I asked if our daughters' names were Rosie and Rachel and she nodded "no." I asked her if we were married and she said yes. I asked her if our daughters names were sofia and isabella and she said yes.
So you probably conclude the same thing that I did. She knows who she is, but she is struggling with understanding her place in the world given her deficits.
She nodded yes when I asked if that was the case. Then she cried.
I began to explain to her that God wants her to be full of joy IN HIM ALONE, not sorrow because we have lost things that don't last. That God wants to bring her to a place where she knows Him as her supreme joy, so much so that she can let go of her physical life and leave that to God to decide what she will regain.
She specifically asked me to ask all of you to pray that God would lead her to that place of joy in Him ALONE, so that she can let go of her mortal life and trust God with it.
Would you pray please. We are sitting in the room smiling and laughing as Charity moves more and more before our eyes.
Praise God.
Jeremy
So, it is 6:48 and Charity is out like a light. She so desperately needs to sleep and she is sleeping very soundly and peaceably I am very glad to say.
Charity just responds so well to steroids. That means that what Mayo thinks this lesion is, could very likely not be what they think it is. Phil, Sylvia and I need real wisdom on what questions to ask. If this were a cavernous malformation of some type, she would not responding so well to steroids. At least that is what the doctors have said. We need to revisit some of the tests that were administered and see if there was anything that could have been overlooked in Omaha.
So I am asking for special amounts of wisdom for us this weekend as we approach the doctors with these unexpected, wonderful improvements and with our questions about whether or not anything may have been overlooked in Omaha in terms of the testing done for various types of inflammatory processes and or infectious diseases.
All in all, we are so thankful for a good day even as we are still confessing and proclaiming that our hope is ONLY in our God who is SO WONDERFULLY GOOD even when the mountains are being thrown in to the seas around us. He is the same yesterday today and forever.
Thank you God for this day of rest for our hearts, and for making our hearts light if only for a season.
We love you Jesus.
Jeremy
When Sylvia and I arrived at Mayo we were greeted by a much more plesant surprise than expected, it was atypical from what was happening this last week. The best was when Charity lifted her arm, moved it over about 6 inches and then plunked it down on a button pad that played a recording, "I love you". She did that all with her own strength and manuevering. Something I was totally not expecting after such a difficult week.
Charity looked alert but she looks like she has been battling with "Lord of the Rings" orks all week. She looked rested from her first night of sleep, but worn.
After being there about an hour she was out again for sleep and is probably "prayerfully" sleeping another good night.
I also was able to read the report from Barrow Neurological Associates in Arizona. They have reviewed Charity's MRI's and their best opinion is that it is some sort of inflammation and not a cavernous hemengioma, although that can't be ruled out completely.
The key word is ATYPICAL Charity has an atypical brain stem lesion. It has baffled all the wisest doctors in the world. The one word they are all in total agreement on is that the lesion is ATYPICAL. As Jeremy mentioned, the fact that she has responded favorably to steroids would tend to support the theory that this is an inflammation of some type.
We plan to do some good reviewing of all the testing done to make sure that she has been tested for all the possible inflammatory conditions.
God has been so good to us in this day in giving us such encouraging news. We remind ourselves that our hope is not in the good reports, but ultimatly in the Lord Himself. While our spirits are bouyed by the good news, it is not our ultimate joy, only He can be.
I got to the hospital about 7:30 this morning. Sylvia reported that Charity had slept almost 11 hours last night! She got up early but had fallen asleep really early last night as well.
Not only did Charity wake up from a long sleep last night its almost like she is waking up from a long awake coma. It seems like she has something like amnesia and doesn't remember a lot of the past two weeks, or even of the past two months.
I have my ipod here and am showing her pictures of her kids. I gave her choices of what she wanted to see, 1. Herself in her childhood 2. Her children and home in Holdrege. She immediately without question wanted to see picture of her kids and Holdrege. She responded in recognizing all those pictures and events.
I then showed her some picures of the early days of her hospitalization in Nebraska. She didn't seem to remember those so much.
At one point this morning Charity also mouthed the words, "Who am I?" to me. Her lips moved SO VERY WELL. She can't speak because the trach tube prevents that happening but her lips were so well forming the words I wonder if she may have been able to breathe out some of the sounds.
I mouthed the words back to her (without making the sounds) she read my lips and began crying. She seems to be afraid she has forgotten things in her life. This fear she seems to be expressing now doesn't really bother us. It seems to be quite normal. The beautifuly thing is she seems to be "coming out" of this phase and moving on.
I visited with Dr. Eggars and Dr. Bell today. We've requested that they review all the lab tests done for Charity to make sure NOTHING has been overlooked in testing her for any usual or unusual inflammatory disease, such as West Nile. We want to make sure she has been tested, tested correctly and that nothing could have slipped through.
This morning I also read the Bible to Charity in Italian and conversed with her in Italian. She remembers her Italian perfectly.
We also read some of the greetings from the Internet site, (I let her read herself while I read them out loud) she seems to follow along well.
At noon today Jeremy and I took Charity to the courtyard outside, where Charity could see the trees, grass, hear the birds and feel the breeze.
She has been able to do all the moves she did yesterday, maybe not with as much strength but some remarkable things. Just a few minutes ago she lifted her arm and extended all digits at the same time. She did this for Jeremy and then repeated a partial lift for Sylvia and myself.
The one thing Charity has really been doing is communicating. She seems so much brighter than she has been in a long time, maybe for a month.
The white board is full of words and sentences she has communicated either with the gaze board or by mouthing words. She is really moving those lips and trying to say things. I think we want to have them attempt to divert the trach and see if she can get some sounds out.
Her first big sentence was, "Why can not talk?" We explained to her the trach tube and that they could divert that later so she would be able to talk or at least attempt to talk.
Other words she has been communicating are...
I want Sofia.
Who am I?
Why am I here?
She has been quite emotional today, but at the same time at peace with her situation and with herself belonging to the Lord.
We are getting her back into her bed now and will see if she can rest a bit.
Sofia,
Your mommy just LOVED talking to you today. She said, that she wants you and loves you SO MUCH. She can't wait to see you soon.
Love
Daddy
Ps. I love you too SO MUCH. Can't wait to see you soon too!!!
Good Sunday Morning to you Sofia:
This morning I asked your mommy if she wanted to say something to you. Using the gaze board she says to you, "Be good."
That's a good thought.
Yesterday we were looking at pictures of you and Isabella.
Today is the 62nd day Charity is hospitalized. She had a good night rest last night. I stayed with her the night. She slept from 8:30 pm until about 7:00am with several breaks during the night when the nurses came in. She never had trouble falling asleep.
It's 10:30 am now and she is sleeping again, taking a nap.
She continues to have a good amount of alertness. We were reading together through a devotional by Joni Earikson. We read the first day, and then Charity got my attention that she wanted to read another one.
She woke up now and mouthed with her lips the word, "OWE". He legs have been cramping this morning, usually the left leg, and that's what it was.
COUGH
SWALLOW
Those are the next big steps in Charity's recovery. Those are huge steps. Those are miracles we would like to see happen. They are extremely difficult neurological and muscular events that have to take place for Charity to regain normal breathing, and eating. They are interconnected with the next gigantic step...
TALK
Stronger lungs, better face and throat muscle movements will open the door to her being able to talk. These last couple of days that's been the big question on her mind.
Again today she wrote out the phrase, with the gaze board... "Why can I not talk?"
This morning I went to church at the Berean Church here in Rochester. I was thinking...
What will it take for us to be completely devoted to Christ and His Kingdom? What needs to change in my heart, and then in this life that I have been given? This is the question that occupies my heart and mind today, and Lord willing, every day that God gives me from here on out.
God has shown Himself to me in amazing way through this trial.
Jesus, In response to Your goodness and proven character, I want to declare my devotion to You and to Your Kingdom to the world. I desire above all else to Know You, Jesus, to love You more than anything or anyone, and to follow You without reservation. I want to proclaim Your glory to the nations. I want to build Your community. I want You to be Lord over every area of my life, and I confess that everything that I am and possess in this life is Yours, completely Yours. They must be subject to You and You alone because of who You are. May You become More as I become less. May You greatly magnify Your name in and through me and my family among the nations. May the world see Your supremacy through our testimony about You. May we take supreme delight in You and in Your community. May Your absolute power be clearly seen in our absolute weakness.
I have seen You in Your sanctuary and agree with David, Your servant that Your love is better than life, so my lips will praise You.
To my brothers and sisters around the world, please pray that these words would not be empty or proven false. I am so easily distracted from what truly matters and from what carries an eternal weight of glory. I need you to pray to Jesus, for His names sake and on my behalf that God would do this in my life, in Charity's life and in Sofia's and Isabella's life.
Forgive me Lord for the time I have wasted on things that don't last. You and Your word alone are eternal. Forgive me Lord for withholding things I saw as precious or necessary because I did not understand that they are garbage compared to You and how faithfully You provide what I need. Forgive me Lord when I relax and become lazy when things are going well. May I never again "relax" from seeking Your face. May my rest come from Your presence. May You instruct me in Your ways, even when i sleep. Redeem the time of my life wasted on lesser things and use even that for Your glory.
I love You Jesus.
Your servant for all eternity.
Jeremy
Today is day 63 and all the kings horses and all the kings men do not know what it is. The cause of the lesion (or mass) on Charity's brain stem remains as much a mystery today as it was on day one.
We do have some understanding of how it has acted over time and the two most likely causes are...
- a cavernous hemengioma
- a rare inflammatory disease
Charity has been tested for every possible known disease, infection, lymes, west nile etc. etc. Her tests have consistently come back better than any of our tests would have.
In our conference with the Doctor this morning he explained that actually the greatest risks to Charity's health now is just her maintaining medical stability. Risks like pneumonia, blood clots, etc. are more of a threat than the lesion acting up.
Each day of her life today and on is totally in God's hands. The lesion could remain inactive for the rest of her life, and that would be good.
Right now the focus of our attention with her is to...
- KEEP her as medically healthy as possible
- Help her recover as much of her lost abilities as possible.
- Help her enjoy each day of life God grants to her
It is 8:56 am Monday and we are still on track to have Charity and Jeremy take the AirAmbulance to Lincoln. As soon as we get confirmation of that from the Social Worker here, Sylvia and I will begin the trip by car, ferrying Jeremy's car to Lincoln.
Charity and Jeremy flew by airambulance to Lincoln, NE this morning. Sylvia and I left at 10:30 with the two cars. As I write this we are in Council Bluffs, IA for a pit stop and to celebrate our grandaughter Katja's ninth birthday. We plan on being in Lincoln around 7:00-8:00.
The flight went well and Charity seems very stable. Jeremy has some good reports and I'll let him update everyone on that.
Thank you everyone for praying for this day to happen. Thank you Lord for another day with Charity.
Today was Charity's first day at Madonna Rehab hospital. She had evaluations by her attending Physician, Physical Therapy, Occupational Therapy, and Speech Therapy.
They tell us that normally a person tires and regresses some after a trip like hers yesterday from Rochester to Lincoln. She seems to be staying quite stable. She is weak and tired but seems to be staying overall healthy.
We are renting a duplex on the Madonna campus for this first week. Then we'll evaluate other possibilities for the long run.
Thursday the staff here will be consulting and looking at a rehab plan for Charity.
This morning she lipped the words to me again, "Why can I not talk?" That's quite remarkable that she is making some very good and complicated moving of her mouth, lips and tongue.
Speech therapy did a swallow test and while Charity has improved in that she still is not there in completing a good swallow.
She seemed a bit discouraged at noon, after all her therapy sessions, but its just the first day. We left her in her room now so she can take a nap.
As I'm writing this Sofia and Isabella have just made their entrance into Charity's room. The first moments brought a gush of tears from Charity.
It wasn't long though and we put on Sofia's musica, she donned her ballet dress and began dancing for Charity. Her moves and vibrancy brought smiles and laughs from Charity. How special!! Charity could use a lot of this medicine of encouragement.
I am sitting here alone in Charity's room as she sleeps. It's my turn while the others take a break. In these past days it seems the best medicine for Charity has been encouragement (like the visit from her children) and sleep. Sometimes hospitals get so busy patients have a hard time getting the rest they need. We see the benefit over the past few days when Charity has been able to sleep good at night.
The rest of us (family and care givers around Charity) also need sleep. It seems like the policy of the rehab hospital will help that for us. They don't allow (usually) family to stay overnight. So this afternoon they were trying to fit her with a button that she could activate. They finally settled on a delicate switch that is just to the right of her head. If she rolls her head to the right she will activate the switch that calls the nurse.
This afternoon she kept on setting it off, mostly by accident but maybe a few times on purpose, because she and Sylvia looked at each other and Charity smiled and laughed. So I wonder if the nurses will get any rest tonight.
I think we all have been running low on rest over the past two months. Those who have stayed with Charity don't get that much rest in the hospital overnight. Those that go home to sleep often get a restless sleep, thinking what awaits us in the morning.
It's at a moment like this, watching Charity sleep a restful sleep that I'm reminded that we all desperately need to follow psalm that says, "be still and know that I am God." Spiritual rest is the most healing of all.
Charity begins her third day at Madonna Rehab. I understand from the nurses that she didn't sleep real good last night. After I left at 9:30 she must have had muscle cramping again during the night.
When I came to her room at 6:50 this morning the first thing she wanted was for me to stretch her legs. She mouthed the word "owe".
Today it seems to be her right leg instead of the usual left leg. Every few minutes she has pain and mouths the word again.
She has a full schedule of rehab for the day, but seems a bit tired. We hope she can rest in between and give her best.
Today Charity moved toes on both feet ON COMMAND. She also pushed down with both feet ON COMMAND.
I praise You Jesus. These good things are from You. This has to be short cause Sofia wants to check her Amail, and she is twisting my head around.
Love you all.
Jeremy
Today I drove back to Kansas City. It was SOOO nice that the drive was only 3 hours instead of 6 hours. I even got back in time to spend some time at the Avant office before closing.
Justin and I had dinner together, bachelor style, and talked about our Charity and her beginning with rehab in Lincoln. Then later this evening Sylvia called and gave an encouraging report as was Jeremy's recent entry.
Here's what has happened since I left Lincoln around noon today.
- Sylvia will be staying in Charity's room tonight. We hope this will help Charity get a better night of rest.
- They took her in the wheelchair outside and Charity was able to doze some in the warm Lincoln air.
- She was moving both legs together and out.
- She wiggled the toes on both feet
- She is moving her tongue more, an out of her mouth as well.
I'm sure these are all movements without that much power, but as she regains strength anything that moves opens the door to hopeful areas of rehab.
Before I left Lincoln today the Assistive Technologies specialist spent a good hour with Charity. She tried out two computer systems with her.
One using "eye-gaze". This would have worked fine but Charity's eyes are too dialated for the camera to recognize her eye effectively. The dialation is probably from medication she is on.
The other system used her head movements. By moving her head (and a reflector on her forhead) she was able to move a cursor around on the computer screen, stop it where she wanted for it to "click". It takes some steady control of head movements to get the accuracy but she did really good. She spelled out a word and "took command" or running the computer. I was impressed for a first try with her cognitive clarity in knowing what to do and also with her coordination of her head.
It's an emotional experience for her to be working with this technology because it must make her think of her situation and how she is "reduced" to having to communicate this way. They will be trying other communication solutions and we hope to keep Charity encouraged in learning and using these aids.
We see these communication aids as "stepping stones" to regaining her touch with the world around her but will continue working with her to regain someday the ability to talk again.
By God's Grace she will succeed at this "stepping stone"
By God's Grace she will succeed at talking again
By God's Grace we enjoyed another day of having Charity with us.
Today marks 66 days of hospitalization for Charity and her 4th day at Madonna Rehab. I had a call from Sylvia this morniing and can report on the following:
1. Charity slept pretty good last night inspite of difficulties with the nurse call alarm button. We don't have a reliable way for Charity to call the nurse herself. Because of that Sylvia was allowed to stay the night with Charity.
2. Today, Thursday, is the day the whole rehab team at Madonna will be gathering and discussing her case. They have done their initial evaluations and now they will try to chart out a plan and some expectations. Pray for this important meeting.
3. At 11:30 this morning they will be doing a video swallow test on Charity. They extend a miniature camera through her nose into the area where the trachea and esophagus separate. The muscles and epiglotis normall close off the trachea when we swallow to keep food and liquids from going down the trachea to the lungs. If those muslces begin working correctly and strongly enough Charity will be able to swallow better and eventually eat food again. Charity would love to eat food again. Pray for the results of this test, as Charity receives them to keep her focus.
4. Increased strength. Again one of the big issues is for Charity to regain physical, neurological and emotional strength. She is so depleted physically that the movements she can do are very weak. Pray for the rehab team (medical, therapy, nutrition) to have wisdom in setting a course for increasing this strength, and above all that God in His grace would grant Charity a large dose of increasing strength.
5. Our Family future. The extended family (George and Schroeder) needs wisdom on how to juggle schedules for those needing to get back to work but at the same time keep surrounding Charity with our support and encouragement. We also need wisdom with housing issues. The apartment on the Madonna campus has been refreshingly convenient! It allows family to stay even without transportation. It's so nice to have Charity's kids there where they can walk to her room. We have a full kitchen as well (not many pots and pans) where we can make home cooked food. That's been an extremely short commodity these two months.
I'm relaying this update from a phone call I had with Sylvia just a few minutes ago.
- Charity doesn't seem to be doing as well today. She's getting that distant "glazed over" look to her. (Our experience immediately alerts us to check what medications she is on. In our 67 days with hospitals we have learned that medical staff will prescribe or administer medications and not consult or explain things with family.)
- At some point earlier this week a "patch" was put on Charity's neck for neck pain. From what we understand this patch has synthetic morphine. This may be the cause of her unresponsiveness. They have now removed the patch.
- Her unresponsiveness and not feeling so good meant her Physicaly Therapy was cancelled this morning.
- Her heart rate was also elevated today, and her oxygen saturation was lower. These may all be interelated. She has been breathing on normal air this week, only aided by a nebulizer.
- The swallow test she had yesterday did no pass. She is still not strong enough with her swallow muscles to be able to eat.
Overall we are very pleased with the therapy and rehab area at Madonna. They are great innovators. We are a bit uneasy about how well she will be followed medically. Charity's medical stability and strength is the "trump card" in the process right now. Pray for us as caregivers (family and friends) to be able to work together more effectively with the hospital staff.
I just got off the phone with Sylvia. Charity is not doing good. Her Heart Rate has continued to be high (140) her hemoglobin not good (showing anemic), her white count is high, her potassium is out of range.
Sylvia and Jeremy have been unable to get ahold of the attending physician to check on her.
They rehab unit is considering sending Charity to the ER at the Lincoln hospital.
Jeremy and Sylvia are a bit "low" at this time. Jeremy is postponing or cancelling his planned trip to Holdrege. I really hope he can get on with it.
I am leaving immediately for Lincoln.
thanks for your prayers. God still knows, and controls all.
-Phil
Well, I had the car completely packed, and I was on my way to say good bye to Charity when I suddenly became unsettled in my spirit. I don't know how, but I knew I would not be allowed to go home today.
Charity's heart rate is ranging from 118 up over 140. It feels as if we are in the ICU, only there are no doctors and nurses.
Obviously we need prayer for Charity and for us. Our spirits at this point are low again. Pray that God will protect my attitude in particular.
What they THINK is going on is that she has another infection of some type, probably a urinary tract infection, coupled with anemia brought on by her monthly cycle. She is on heprin and that makes anything that bleeds worse. She is therefore low on hemoglobin and therefore her heart rate is high to compensate for a short fall in oxygen flow to her body. The heart rate is also probably elevated due to the infection her body is attacking on top of everything else.
Charity is frightened. She looks at me and I know she is worried about me and the girls. Pray that God would meet her when she is tempted to be afraid and give her unspeakable peace. Pray that we would be very aware of God in moments like these.
Love to you all.
jeremy
Charity is stable. WOW. I can't begin to describe what we just experienced.
Bad news. Charity has bled ALOT. She had to get blood (4 Units). She most likely has bleeding from an ulcer like something in her gastral intestinal tract from being on steroids. She also lost ALOT of blood from her monthly cycle due to being on heprin which thins the blood. She also may have to have surgery tonight yet or early tomorrow to repair any bleeding from ulcers which is obviously is made worse by the heprin as well.
Good news. Charity is stable and in fact her numbers or stats look better here than they did at Madonna. Her heart rate is way better and her blood pressure is back where it should be due to the increased volume in blood. This may have been a really messed up way to find out some bad things that were happening that needed to be given attention that we would have otherwise missed.
Also, Charity communicated to me during one of the scariest moments in all of this that she knows where her hope is. She promised me that she will be calling out Jesus' name whenever she is afraid.
As far as where we are at spiritually after all of this...We want to know Jesus intimately, love Him passionately, more than anything or anyone, and we want to follow Him without reservation. God's grace is sufficient to sustain us, and He has proved that once again.
I praise You God, for all to see. Bring the attention of every person, every ruler and dominion in the heavenly realms to You and the might and glory of Your character even in this.
I love You Jesus.
I love all of you who are reading this.
Jeremy
First a recap of the past 24 hours.
- yesterday our family noticed Charity not doing to well during the day at Madonna. (rising heart rate, other signs that we have become familiar with over the past two months.) It took many hours and some very evident changes in her status for the staff to take our concerns seriously.
- Around 5:30 pm Charity stopped breathing and they rushed to "bag" her and she responded.
- Charity was taken by ambulance from Madonna Rehab hospital to the Emergency Room of Bryan East Hospital in Lincoln.
- They assessed her, stabilized her and moved her up to the Intensive Care floor. Currently she is in room 639
- The plan is to stabilize her and then return to Madonna for continued rehab.
Charity's vital signs were good overnight. She had some loss of blood but its not sure how much or from where. Her hemoglobin was fine overnight 12, and slightly lower this morning 10. Today they are planning the following.
- She is having another MRI as I write
- This afternoon they will do a colonoscopy and endoscopy to see if they can find the source of bleeding in these locations.
We are concerned about the colonoscopy for two reasons...
- because she is so weak physically, any intervention puts a huge strain on her and the risks run higher for complications.
- nutrition, to do the procedure she has to be off her feedings. It has been so difficult over these last weeks to keep Charity's intake healthy. Various medical procedures seem to always make it necessary to stop the feedings. They were going to do the colonoscopy early this morning, then it was noon, now its afternoon. Those are all more hours she is without food.
Somewhere along the way we need to find the right combination of medical and nutritional approaches to get this young lady strong enough and healthy enough to undergo some good rehab.
As far as we know the lesion has remained the same and is not the key factor. It could stay unchanged for a long time, years, but no one is going to give us a prediction. It's really only God's hand that has held that lesion from further damaging Charity in the past five weeks.
Some trivia information. Today, June 30 is Charity's sister Amee's birthday. Happy Birthday Amee.
I'm sitting here in the ICU unit. Charity is drowsy after her colonoscopy, Sylvia is standing by her side holder her hand. The machines pump, whilrl and beep and Charity sleeps. Sleep is good. Food is good and they should be hooking up the tube feed in a short while.
The colonoscopy came out basically good, some places of minor bleeding but since she was on heperin (a blood thinner) it caused her to bleed a lot.
She'll be off blood thinner for a while, but that also raises the risk then for blood clots. The key then seems to be able to walk that delicate balance between "side effects". Which medications do you to help? and When will they begin working against you?
MRI results aren't back yet, but we may not hear until tomorrow if there is nothing significant to report. We are pretty sure they will not have anything new to report.
At about 6:30 pm they began the feeding tube feeding. That's good, nutrition again.
Earlier in the afternoon they gave her the muscle cramp medication, flexiril. That has helped the cramping.
She is also under some medications that keep her somewhat drowsey, that helps her sleep though.
We've had several visits today from people from Charity and Jeremy's church in Holdrege. That's nice to be closer to their home again and the people that have stood so close to them in these days.
This afternoon sitting by Charity's bed I've been reading a book, "When God Weeps" by Joni Eareckson. There are some challenging thoughts on suffering and its place in the Christian's life.
Early this morning the hospital called us and informed us that Charity's colon had perforated. (The Dr. who did the colonoscopy yesterday had seen air in the lining of the colon and did tell us that often leads to perforation.)
They will be performing surgery in a couple hours (about 10:00 am today). The surgeon dong the proceedure is currently in another surgery so Charity is in line after that one.
Is this road only a downhill road? When can she get the medical/physical strength to regain some of what was lost neurologically?
The MRI results showed nothing new. The radiologists here do want to compare it to previous MRI's. So neurologically nothing significant seems to be happening which is good, but medically Charity is desperately needing some stability and strength to move ahead.
We are all in God's hands. His sovereign control has not missed a beat. On this Sunday, a day of worship, praise God for His sovereign hand over each of our lives, over your lives. Intercede that His peace, and rest be on Charity at just another discouraging moment in her valiant struggle.
I missunderstood the call from the hospital this morning. They suspected that Charity's colon MAY HAVE PERFORATED. They had xrayed her and seen air in the abdomen. That could come from several reasons, the most likely a perforated colon.
We saw the surgeon about 30 minutes ago and in visiting with him suggested that before they perform surgery they do a CT scan to see if that would give more information on what's going on, especially if there is infection. Peritonitis in her abdomen is something we want to avoid at all cost, but we don't want to have Charity undergo the rigors of surgery if its not necessary.
They have just wheeled her down for a CT scan.
If they see it necessary to do surgery several options will be to close the perforation, or even to do a colostomy (http://en.wikipedia.org/wiki/Colostomy). We really hope they don't have to do a colostomy and add ANOTHER tube to Charity's body.
I expressed to the surgeon our desire to prevent surgery, or the colostomy, but that above all things we want to do whatever necessary to get Charity in a stronger medical and physical situation so she could move ahead with rehab and regain those neurological losses.
God's design and plan for Charity's life continues to take on an unending number of turns and dips and bumps.
The results from the CT scan show that there is air and fluid in the abdomen that could possibly be infection as well. The surgeon and GI doctor feel that they need to do surgery on Charity. Infection in her abdomen would be extremely difficult to deal with.
Charity followed the report from the doctor and agrees that they need to do surgery. It's not a path we wanted to be on but if our overall goal is to get Charity strong medically then the surgery will need to be done.
The surgery will be sometime today in mid afternoon. There is one or two surgeries scheduled before hers.
Heidi and her husband Steve have arrived here in Lincoln and all of us around Charity's bed engaged in a bit of boistrous conversation. Justin is especially adept at getting his sister to smile and laugh. She had quite a number of laughs and smiles with her family.
They are preping her for surgery, which means once again, NO FOOD. They are going to start some nutrition through her IV.
This is definitely a smaller hospital than Omaha or Mayo, but we are impressed with their good care here. I guess we should be pretty good by now on evaluating quality of medical care. We have also learned a lot on how to ask tough questions of doctors, and quiz medical staff for details in the care.
At 4:10 pm they wheeled Charity down for surgery. The proceedure is exploratory. The purpose of surgery is...
- find what caused the bleeding she experienced Friday.
- see if there is infection in her abdomen and clean that up.
- repair any possible perforations in the colon.
- evaluate whether they need to perform a colostomy.
- biopsy tissues in the abdomen for any diseases, (we continue to pursue any potential linkage between the brain stem lesion and other medical conditions she has experienced.)
At about 5:30 the surgeon came and gave us a report on Charity's surgery.
- Her vital signs were good through the surgery.
- Her colon was in good condition but the air near the end required that he remove that area and close it up.
- There was some leakage of liquids into the belly area, that was cleaned up and they are culturing that for specific antibiotic treatment of that infectious.
- He did NOT need to put in the colostomy. Yeah, one tube that Charity doesn't need to add to her portfolio of so many tubes already.
Overall the surgeon was pleased. He was a gracious, and sensitive surgeon and we are thankfur for him being God's hands in performing this surgery.
Good afternoon everyone. Charity remains stable, although she seems to be in unspeakable pain. I really need all of you to pray for Charity just to heal quickly and stabilize a bit more in respect to her heart rate. Right now it is resting around 100-105 bpm. It is elevated most likely because of her intense pain.
I won't believe that of course until her pain is gone and we see that her heart rate decreases with that improvement.
We had a neurologist tell us today that he thinks that the lesion in Charity's brain stem is gleoma again. He only has one set of MRI's to look at and nothing to compare them against. But as you might imagine, I was and am going through all the emotions all over again, when we first heard that horrible word.
Would you also pray that God might allow Charity and I to have a break. We are both weary. Weary. Weary.
God we need Your perspective now more than ever. Please help us to see You and to be even more aware of Your supreme reality for us in Christ.
Sorry for worrying so much today. Give me the grace to trust You completely.
Jeremy
Today begins day 71 of hospital in Charity's saga. Today and this holiday week have all the markings of a difficult walk as we step along that emotional roller coaster.
Jeremy shared yesterday the glioma word. The word that spells an almost certain fatal end. Whether that is verified or not its a word that brings a huge emotional swamp to all of us around her. The neurologist at Lincoln it seems, sees something different, or a change in the lesion, but he's looking at very few of Charity's MRI and CT scans.
We are in the process of both sending this new MRI out for 2nd and third opinion, as well as requesting ALL of Charity's MRI and CT scans from Mayo for cross verification.
As far as I know, Charity has not been informed about that BECAUSE WE NEED SECOND OPINIONS. We heard this word very early on in Charity's ordeal but since then not a single doctor from Mayo Clinic to Barrow Neurological has seconded that opinioin. No radiologist, even the radiologist in Lincoln have not seconded that opinion. If you would poll all the doctors and radiologists who have seen Charity's case probably 49% would see this as a cavernous hemengioma, 49% would see this as a rare inflammatory disease, and 2% would see this as the cancerous glioma tumor.
However having someone from the 2% speak out puts us all in an emotional tailspin. We do want to know the truth and if it is glioma we ask for God's grace to accept that path. We will not keep Charity shrouded in false hopes but I think we are all agreed to not bring up this topic until we have had it amply verified.
If you visit Charity in these next days, or if you write her please don't bring up this topic until we have had a chance to verify the true situation.
I am in Kansas City today and will be leaving for Lincoln as soon as it is practically possible. My bags are packed and I'm ready to leave at a moments notice.
So Jesus got me thinking today...
Would you rather be a parent who is necessary or influential?
Watching my wife suffer like this, with her life coming so close to an end has forced me to think seriously about this question...
The simple truth is that God doesn't need Charity and I to draw, save, or use Sofia and Isabella. That is scary, because it places all the control of our children's lives completely in the hands of God.
His hands are strong and He is more than capable of accomplishing what concerns us about and for our children. We are unnecessary. We are simply a good gift that God gives to our children for a time. So, we should spend that time INFLUENCING, not training our children to think that we are NECESSARY.
God is the only NECESSARY being. He is the Good Shepherd. He is the Resurrection and the Life. He is so much more.
I hope this thought encourages you as it has me.
Jesus, You and You alone are necessary. May Your church be filled with parents who are INFLUENTIAL, and are not NECESSARY.
Take our children Lord, for You are worthy of them. Take them and use them to magnify Your name among the nations. Revive Your church in North America using our children, as we are faithful to disciple them in Your ways. Revive us.
In Jesus Name
Amen.
Oh, by the way, that applies to marriages...I would rather be an influential husband, than a necessary husband.
Charity is doing really well today. She continues to show improvement in her movements, but is battling emotionally. Please continue to intercede for her.
Jeremy
Charity is peacefully asleep as her 71st day in the hospital concludes and day 72 waits to begin. The Lord watches over her as we resign our vigil at her side the to ICU staff.
We aren't sure when they will dismiss Charity from the ICU unit. We do know from the doctors that they are looking to see her improve in...
- increase her platlet count
- see her potassium increase
- see her blood thinness/thickening stabilized correctly (medications play a big part)
- do what they can to prevent any further bleeding in any other part of her body.
She presents a big challenge to the medical staff but Charity is eager to get out of ICU and back to some rehab work at Madonna.
Neuro specialists (to the North and South) are reviewing the latest MRI's from Charity. We want to see if anyone else has seen any changes in the lesion.
Each day presents us as family with new challenges, new highs or new lows. We don't know what each day will give or take, nor how difficult it will be to find encouragement to bring to our daughter and ourselves. We know that ultimately our only hope and encouragement lies in the Lord.
There have been so many that have come around Charity and us as a family, but we know that life will move on. People will need to attend to their own worlds. We thank God in the meantime that He has been able to touch so many people through the life of our daughter, as difficult as that has been for us.
Today dawns day 72 in the hospital for Charity as well as the 4th of July celebrations across America. Independence Day will be more of the same ol', same ol' for Charity. The narrow walls of the ICU unit, the pumps, machines and tubes. One 4th of July treat is that her nurse is "Glo" from the Berean church here in Lincoln.
She has expressed several times wanting to get out of here and back to her "working world" at rehab. An Independence Day treat would be getting out and seeing the world out there.
Medically Charity's vitals are good, her abdomen is healing. The surgeon came by and was pleased with her progress. She is having quite a bit of pain. They dropped the pain medication dosage (phentenol) from yesterday and that seems to add more pain, so they just increased her dosage to 65, halfway between what it was yesterday and what they hoped it would be today.
Otherwise Charity is healing well. Her platelets are increasing on her own, her electrolytes are good. All the biopsies have turned out negative. So once again there is no indication of any disorder, or cancer in her system. They have her on a respirator but at a very minimal setting and should be able to return her to breathing room air on her own before too long.
She will continue to be drowsy today, due to the pain medication.
I left Lincoln about 6:00 and arrived back in Kansas City around 9:00 pm. Communities are lighting up with the 4th of July fireworks, but I know that 3 hours away in Lincoln it was just another day for Charity.
Another day to look at the walls of the ICU room.
Another day to try to communicate the latest, pain, discomfort or cramp to those around her.
Another day to reflect on the big questions of why she is here, where is this taking her, what will be the next medical emergency.
I wonder what its like to be in a body that can't move (or hardly move), that can't eat, that can't speak, that can't communicate much, that can't chose what to listen, watch or read. What would I be celebrating today?
Our prayer is that God would open up more avenues for Charity to participate in life and to be increasingly at peace in her relationship with the Lord. We have no guarantees on what her health will be nor prognosis for recovery.
As a family around her, her husband and children, we move forward with all of our possible efforts, trust in God, and ultimate hope in Him. If the lesion remains stationary we see good reason to hope and work toward some great strides forward for Charity. As time passes it will become increasingly difficult logistically to keep up the same pace of support around her. We pray that we have wisdom to keep ourselves healthy physically, emotionally and spiritually to provide the strong support she and her family needs.
Medical Report: Today Charity stayed remarkably stable. Her vital signs were as good as those of any of us. She is on a ventilator but just barely above breathing room air. She is receiving feeding through the feeding tube. She has a slightly elevated temperature during the day but that was lower by evening. She continues to move her right arm, hand and wiggle both toes. She uses her head to nod "yes" or shake, "no" usually with good motion. The surgery seems to be healing well. The biopsy's showed nothing abnormal.
Her greatest struggle today is the pain from the surgery. The pain also makes it difficult to cough, making her weak cough even weaker for now. She is on pain medication which can be increased as needed through the day.
By evening, aound 8:00 pm she was tired and fell asleep. The family left her soon after in the care of nurses, angels and God Almighty. She will probably wake early in the morning 4-5 am and begin "just another day".
This is information I got from Sylvia as I just spoke with her by phone. I hesitate to give too many details since I'm not in Lincoln and we want information to be as accurate as possible.
Charity has been upgraded from Intensive Care to Progressive Care. This means they feel she is doing good enough to not have to be under as much observation.
She is still in quite a bit of pain, so they continue the pain medications. We would really like to see her off of pain medicine. They can cause two negative things, -they keep Charity a bit unresponsive -they can also cause constipation which was probably a factor in her hemoraging in the first place.
Charity's vitals have been mostly good during the day, the only observation is her heart rate has gone up and down during the day.
The surgeon is pleased with her healing and has increased her tube feeding of food.
Conferences were also held with the Madonna staff and things are moving ahead to move Charity back to Madonna in the coming days. When that happens wasn't clear to me.
Right now I'm sitting in Charity's room (this is Justin charity's brother) watching her blood pressure and heart rate with incredible concern. Today charity was in incredible pain, but overall things were still looking up. It seemed she was recovering well from the surgery. Then around 6:30 this evening, we discovered a bunch of blood on the bed. After freaking out, for a few minutes we were assured this was normal after an operation (it was "old" blood), and it shouldn't continue. Her heart rate and blood pressure were spot on. But over the next half an hour her heart rate slowly started to creep up, her blood pressure crept down, and she became less and less responsive. At 120 Beats Per Minute we figured something must be wrong.
We're now waiting for the doctors to come and check her out. Naturally we are very worried because this is the same condition she had when she had the last bad spell that sent her here to the ICU in the first place.
All your prayers are appreciated, get anyone you know to pray. Hopefully this is just a "false alarm". Thanks
Justin
I got a text message at 12:30 last night from Justin. Charity's surgeon was in the hospital during the night and had ordered some tests to verify if there was hemoraging. Justin's message refers to that, "Test turned out good."
I will be leaving for Lincoln after 4:30pm today. We really hope Jeremy can take his girls home to Holdrege for the week-end today. This has happened so many times, just when he's ready to go and make a visit, something happens.
I'm particularly impressed this morning reading the prayers of Jesus in the garden just before His arrest. In Mark 14:36 “Abba, Father,” he said, “everything is possible for you. Take this cup from me. Yet not what I will, but what you will.”
There are several things pouring out of His heart that he knew were being tested to the maximum...
- His loving relationship with "abba Father", his heavenly father. He knew the closeness of that relationship was about to be destroyed.
- He knew His Father could do anything. Nothing was impossible for Him to do.
- He knew that The Father's Will (His Plan) took precedence over what was "convenient" for Jesus.
We would so long to see the "cup of suffering" for Charity to be taken away, for her to be restored to complete health. For her to get up out of that bed, walk, return to her family, church, community.
We know that this is not impossible for God to do.
Yet, above and beyond anything that we could ever want, wish, or imagine, the Father's plan for Charity's life, our lives is the perfect plan, the right plan. We don't know where it is leading us. It has already taken us through a difficult "cup of suffering" but there may be more down the road. Am I willing to accept that? Are we willing to accept that?"
"Take this cup from me. Yet not what I will, but what you will.”
We finally succeeded in letting Jeremy and his two girls take the week-end off and spend it at home in Holdrege. No last minute crisis prevented this week-end from happening. He'll be able to spend two nights there, reconnect with people from their home church before he heads back probably Sunday night.
Sylvia and I are the caregivers this week-end and will stay through the Doctor conferences on Monday morning. We'll then head back to Kansas City and Lord willing spend most of the week there getting to know the new missionary candidates who are just coming in for two weeks of training. Amee, Charity's sister should be here in Lincoln with her a good part of this week.
As far as I know things are still on track to get Charity back to Madonna on Monday. Her vital signs have been good. They have reduced her pain medications and today may only give them as she needs. That will help brighten her mind a bit. She still has muscle cramping, we may need to consider the tapering off process of the steroids. That could help that issue.
Her surgery seems to be healing well and that area of her body returning to pretty normal function.
We have received all the MRI and CT scans and reports from Mayo and they will be reviewed and compared here by the neurology deprt. Her latest MRI done here in Lincoln should also be under review at Mayo and at Barrows in Phoenix.
I found a free podcast narration of "Pride and Prejudice" by Jane Austen and Charity is listening to that now.
We pray for a good week-end of renewed friendships and encouragement for Jeremy and his girls.
Today is the 75th day Charity is in the hospital, and it's pretty much uneventful. We like it that way. Just slow recovery and healing. The most eventful thing of the day was a surprise visit from her sister Amee.
Charity does have a lot of sad spells. Times when she will cry. I'm sure part of that is induced or enhanced by the miriad of medications she is on.
They took her off the phentenol pump and have her just on pain medicine as she needs it.
She has been quite eager to try to communicate things with us. She does this by lipping words. We weren't too good at guessing so I sent to Target and made a gaze board out of a foam board. With the new gaze board she has written several words and phrases.
HOT - she wanted to be cooled down. Even now when we think all her limbs are chilled she still wants to stay in the cool mode.
MISS HIM - To tell us how she felt after Jeremy hung up, he had called to find out how she was and wish her well.
She has also expressed several times that she wants out of here. She's wanting to move on to Madonna. ICU is just not a fun place to be.
She has listened to five chapters of Pride and Prejudice and is on chapter six.
I was in Charity's room by 7:00. She was brighter and more clear minded than she has been all week-end. One thing she has wanted to do is to write sentences to us with the gaze board. As I write these words she is giving Sylvia a new sentence. Here are some of her communications today, and some of the context of those sentences.
"DAD, WHERE ARE YOU NOW?" (She is not real clear where she is, so I explained which hospital she's in and why she came here.
WHY CAN'T I TALK? (she has asked this question before. I think she may be asking it in the way of, what's taking so long that I can't talk yet.)
WHEN IS HE COMING? (She was asking this about Jeremy when we explained that he was home in Holdrege with the girls.)
LEAVE NOW. (This was in response to Jeremy being in Holdrege and wanting him to leave Holdrege now and come to her. We explained the importance of Jeremy, and everyone else also, getting away to renew and refresh so that he could better help Charity during the time he is here.)
DON'T LEAVE (She was wanting to make sure Sylvia and I didn't leave)
Medical Report:
Charity's vitals are good. Her hemoglobin is excellent.
Her heart rate is a bit higher today, we're not sure why that is but no one seems too concerned. They have prescribed a real low dose of blood thinners, we're checking into the wisdom of that. They reduced the pain medication again, which is good, that allows her to be more attentive. Her breathing is doing very good. They are weaning her off the respirator and do not have her under any oxygen. She doesn't have as much muscle movement, but that is quite normal for her when she's going through a fatiguing medical event. We've seen that before and are confident she will have those back again and more.
The neurologist (Dr. Peti`) visiting her today is going to have her do some type of visual test to exam the speed which the eye and nerves send the signal to the area back of the brain. This could add some new information in the diagnosis picture. He seems to be interested in the INFLAMMATORY-IMMUNE DISORDER scenario as a possible cause of the lesion. He seems to put the glioma tumor and cavernous hemangioma lower on the scale.
Jeremy got a call from the hospital around 5:00 this morning. He came to Charity's side right away and Sylvia and I followed son after.
Charity's blood pressure had fallen during the night and they were concerned about what it might mean. They've increased he fluids and that has brought the blood pressure up. They are checking for pulminory problems, blood tests etc. Her hemoglobin dropped, but probably from being diluted.
She seems quite stable now. They will do more tests to make sure there aren't any complications. These little bumps along the way have continually delayed her getting into serious rehab. We agonize with her in just wanting her to be able to move on safely to the next step.
Today Sylvia and I have planned to return to Kansas City for a few days. Charity's sister Amee will be with her most of the week.
Sylvia and I had originally planned leave for Kansas City this morning, but we decided to postpone the trip until we got the results from the CT scan of last night and the VQ scan.
Heidi, (Charity's sister) will be with her this afternoon from 1:00 to about 4:00. Around that time Charity's other sister, Amee, will be arriving and staying in Lincoln with her until Thursday. June, Jeremy's mom, is with Charity & Jeremy's two kids, Sofia and Isabella. They stay in the apartment we have all rented here in Lincoln on the Madonna campus. Justin continues his flight lessons in Kansas City. Sylvia and I will be back in Lincoln then this week-end and maybe Jeremy can make another home visit to Holdrege. Everything of course subjet to change.
Charity seems quite stable this morning. They are giving her another unity of blood. Her vita signs look good. She is under a lot of sedation for the abdomen pain, and drifts off to sleep once in a while. She also had a spell of nausea this morning.
We had a long conference with the staff at Madonna and hope things will be in place to better meet Charity's medical needs when she gets back there.
Charity continues to do a lot of spelling with the gaze board. She's spelled out Madonna several times and asked when she's going back there. We hope she stabilizes soon to bet back there.
- by Phil
Sylvia and I did leave Lincoln around 2:30 this afternoon, and we made it back to Kansas City.
Before leaving we found out that the CT scan of the brain stem lesion from the previous evening showed the lesion was unchanged, (I was almost certain that would be the case). It's about 50 days now that the lesion has stayed essentially the same (except the bleeding has stopped and blood is being absorbed into the body). The VQ scan didn't show any blood clotting in the lungs.
Heidi was with Charity for part of the day, and Amee arrived later in the evening. Amee will be taking turns this week with Jeremy to watch and encourage Charity.
We still hope the transfer will take place to move Charity back to Madonna from BryanLGH. That all depends on her stability. She was in ICU most of this last week, moved in Progressive Care status for just a few hours and then was moved back into ICU status where she has remained since.
We thank God for the ray of hope that we have in that the lesion has remained stationary. However, her body has been so weakened by the neurological trauma, the paralysis, the long hospital stay, and the side effects of medications that she needs the hand of God to keep her stable if she is going to have any serious opportunity to do aggressive rehabilitation.
So as you pray, praise God for the 50 days the lesion has not worsened. Pray for her precarious medical condition to stabilize and for healing strengthening of her body.
We continue to see her do most of the same movements she has been able to do in the past, sometimes with more sophistication. We just wonder what she would be able to do if her body was strengthened.
In spite of heavy medications that fog her mind, she has really taken to spelling words, lipping words and trying to communicate.
- update from Amee by phone to her parents
Charity's vital signs were mostly good the remainder of the day. There was some concern because Charity's chest continued to hurt. Her vitals stayed stable even during these incidents. It isn't clear if the pain is due to something physical or just anxiety.
Charity was moving her toes and also pushing with her left foot.
Tiffany is her nurse tonight again and brought her a DVD Bible study by Beth Moore on the book of Job. Charity enjoyed watching it until she became too sleepy to continue.
There is talk that Charity may be able to move back to Madonna in the next day or so as long as she remains stable.
Jeremy and Amee ask you to pray for the following
- For a correct understanding of the chest pains, if they be something physical or anxiety.
- Pray for Jeremy to get a full night of sleep tonight.
See Charity doing her gaze board thing at these new photos, http://www.charitygeorge.com/index.php?page=photos&album=4
Today Charity is doing ok. When I came in her heart rate was elevated again due to pain. It has since come back down when she can rest. She is really struggling emotionally today. She keeps looking at the pictures of Sofia and Isabella nd crying out in agony.
We feel like the chest pains Charity complained of yesterday are not physical. Just anxiety. Charity has been off of her small dose of anti-depressants and is likely feeling the effects of that.
We are praying a simple prayer for Charity.
Lord Jesus, heal Charity and change our hearts or just change our hearts.
In Jesus Name Amen.
God we need your sustaining grace to be enough for us today. Just today because I am afraid to look at tomorrow. Keep our hearts united Lord Jesus. Keep our hope and faith COMPLETELY in You and in the inheritance you have promised us. Protect Sofia and Isabella and Charity from the evil one. You desire us to be closer to You. Our enemy desires separation from You. Do not allow him to triumph over us, so that Your name will be lifted up among the nations.
We trust in You. You are our life. You are our refuge. Apart from You we have no good thing. We long to be filled with joy in Your presence. We long to experience that eternal pleasure. Honor Yourself Lord. Only keep us close to You. Closer than close. We need You because we can't on our best day. We want You because You are good. We love You only because You loved us first.
In Jesus Name
Amen
Please pray that Charity won't leave the ICU until EVERY issue is addressed, covered, checked and rechecked. Pray that after this, she will be able to experience encouragement of working toward a goal and seeing positive outcomes. Pray that if at all possible God would allow us to NOT visit the ICU again, and that Charity would stabilize and improve. God's will, WILL prevail. We are submissive to His will.
Our lives are in Your hands O God.
Jeremy
Today has been really stressful at times. Charity has been complaining about chest pain and difficulty breathing. Obviously we have been concerned.
well, from what we can gather, Charity's heart rate is up due to severe muscle spasms and anxiety.
There is nothing internal going wrong. She is just very uncomfortable physically and mentally and emotionally.
Also, Charity's blood pressure dropped to a concerning level two nights ago. They found the reason for that as well. Her adrenal glands are not functioning to their fullest capacity due to long term steroid use. They can correct that with medication. So that should not be a concern Lord willing.
They are starting her back up on baclofin and flexerill for the muscle spasms. Other than that, she is doing quite well. Her blood pressure has been really good and her hemoglobin is at 11.8 out of 12. That is the highest it has been in a long time and it is staying at that level.
Please pray that she will find real rest and comfort in her God and that physical comfort will return, Lord willing, after a LONG absence.
Please pray also for this weekend. I am going to pray and ask for God to allow me to come home again with the girls for a day longer this week.
I am seeking God's will in allowing me to be in Holdrege from Late saturday night to thursday mornings so that I can resume my responsibilities as soon as the Lord allows. I need to prepare Charity for that with all sensitivity and gentleness. I need God to give peace to her heart and mine about this goal. We need God's wisdom in this. So God if that is Your will and Your plan, make it so. Please prepare Charity's heart for Your will and plan for her life in the coming weeks and months.
Heal her and change her forever in this. Please give hre fullness of faith and peace in her spirit and mind so that she can cope with the difficulty of this trial to which You have lead her, and through which You will purify her. Our hope and our trust is in You.
Thank you for the answers that You have provided about what concerns us today.
We love you FOREVER. May You be lifted up above all else.
Bless the team in New Orleans with revelations about Your character, and bring them together in unity with each other and with our brothers and sisters in New Orleans. Glorify Yourself in our unity.
Work mightily in them and through them. May You be glorified as they come back and share what You are doing in that area of our country. I pray that You would draw the couple from France to Yourself through their testimony. May they come to know You through Your Son, Jesus. may they take testimony of Your great name back to France so that it may be lifted up in that place as well.
In Jesus name.
Amen.
Jeremy
Today is day 79 in the hospital for Charity. It's also about 56 days that the brain stem lesion has remained unchanged.
The following information is from our daughter Amee who is with Charity this week in Lincoln. It was phoned to Sylvia and then too me, so I hope everthing is accurate.
1. Charity slept well last night and is also taking good naps today. Sleep has helped her a lot.
2. She is not having as many muscle spasms
3. Charity's vital signs have been consistently stable.
4. Her hemoglobin is good and stable, as well as the blood platlets
5. Yesterday they detected blood in her stools, but they don't seem too concerned about that. They do have blood on hand in case that would be needed.
Praise the Lord with us for the stability Charity has had in the last 18 hours.
Amee also had the delight of a phone call from Italy, (a family friend, Francesco from the Bologna church) to tell us he's praying for Charity and our extended family.
I received a call from Amee 30 minutes ago. They will be moving Charity back to Madonna Rehab today at about 2:00 pm. That's 50 minutes from when I write this!
This is a very encouraging milestone for Charity. It will allow her to have her kids visit again. It will get her into more intensive therapy.
It will challenge her physically, medically and emotionally. Please, lets hold her up in prayer, and in words and messages of encouragement. I could just cry my daddy tears for her right now, my girl is so weak a frail. She walks such a thin line between keeping what stability she has or relapsing into another precarious medical spiral.
Pray that the nurses and medical staff that care for her at Madonna show an extra amount of attention, care, concern, and wisdom.
We left Bryan East today at 3pm. We got Charity into her room. We decorated before she got here. She is happy to be here again and out of ICU.
Her pulse right now is 60 and her blood pressure is 109/81. Please pray that the staff here will watch very closely for all of the following:
blood clots
blood in stool
hemoglobin level
Pray that if there is any change in these things of concern that action will be taken immediately.
I told the staff here not to be afraid of mistakes. All we want is to have Charity have the best chance possible for a meaningful recovery.
I am a bit nervous and anxious. Just seemed that the move today was a bit out of nowhere. I am praying that God would give me the peace and assurance that every move we make in the coming days and weeks and months will be His will and purpose for our lives.
Charity is very sleepy. I guess tomorrow starts a new day of rehab. Pray that Charity will be rested and alert to participate in those sessions.
We are waiting to consult with a Neurologist that will be following her case. He should be receiving word from Mayo and Barrow about the most recent MRI taken of Charity's lesion.
Just letting you all know the good news.
Jeremy
Gotta go stretch Charity's legs.
We had a bit of a scare already with Charity no more than 1 hour into her stay here at Madonna. She went very pale. She was in the middle a severe leg muscle spasm. We of course assumed that she was bleeding internally again.
Her vitals remained stable, but she just didn't look well. Once the spasms subsided her color returned. That wouldn't have returned if she had been bleeding and there was certainly no other evidence of bleeding.
She looks peaceful and full of color right now. Anyway, I need your prayers. I am already nervous about her being here because of our last trip to the ICU. I am anxious. I need your prayers, just to trust God that our being here is not an accident, but His purpose for us.
Pray that God would encourage us, and that His purpose of drawing us closer to Himself will prevail and that the enemy's intention of creating separation would find no victory here in our hearts, minds or BODIES.
Charity is resting peacefully.
Love all of you.
Jeremy
Charity seems a bit more alert, but has been in pain since I have been here. I got here at 7am to see what the doctor had to say. She is sleeping again. Her vitals look impeccable, but her hemoglobin dropped again from 10.3 to 10.0. I haven't seen it come up without a transfusion unfortunately. That concerns me because of her recent surgery and the fizzure that she has developed.
She is off of blood thinners. Please pray protection over her body from clots, and from any further drops in her homoglobin. Please also pray that if there is a bleed occurring that the staff here would be VERY concerned and send her immediately to the ER once that concern arises, and that the concern would arise before another incident like the last time.
Sofia is very sick as well with a cold. She has a fever and coughs to the point her hands shake. It is loosening up a bit we think though. She is on antibiotics and Motrin for the fever. We are also giving her Mucinex to help with the cough.
Isabella seems fine. No fever or cough.
Lord Jesus, I am certain that if I knew You better, I would not be trembling so much in my heart. I know that were I in Your physical presence and could look into your eyes, my fears and concerns about Charity would melt away. But here and now, I admit my worry and concerns to You. I don't want to be anxious. I don't want to live in fear.
You are my refuge and my fortress. Only in You do I find rest for my soul. There is no one else besides You. I don't want control, I just want peace in You, that Your will is going to prevail, not our own and not our enemy's will. Deal with me on my fear and worry. I love Charity Lord. I can't help that I love her. You are the One who made her for me. You are the One who gave her to me. You haven't taken her from me, but You have taken my ability away to help her. I am powerless. I am weak. On my best day there is nothing that I can do for her other than love her. God give me the grace and the strength I need for today to love her well. I can't do this without You. You are my life. Apart from You I have no life. Please Jesus, speak peace to these waves and the storm that surrounds us. You alone have the authority. The winds and the waves obey only Your voice. I cling to Your strong hand. You are the only One I trust. I love You, I need You.
Keep Charity in perfect peace in her mind, heart and soul. Keep her faith and her trust in You. May she never meet another circumstance or turn of events in life without absolute confidence in You and in Your promises. Give her the grace to endure today as well. Speak peace to her body. Keep the enemy far from this place. Utterly defeat His schemes as he attempts to drive a wedge between You and us.
I wait for Your deliverance Lord more than the watchman waits for the morning. More than the watchman waits for the morning. Deliver us.
In Jesus Name
Amen
yesterday was a bit of a stressful day to say the least. Charity sat up in a chair at one point and her heart rate raced past 140 for some time. That was scary given the lower level of medical care that the staff here have the ability to provide.
Charity's heart rate eventually returned to "normal" when she was laid back down in bed.
Today Charity seems more rested and more alert. Her heart rate is doing well around 80. The big encouraging news today that her hemoglobin level went up .1. She was at 10.0 and is now at 10.1. That is encouraging given her recent bleeding episodes.
Her color looks good and is ready to work. Please continue to pray for her spiritual well being first, her emotional well being and her grieving process, and also for NO MORE SET BACKS.
Lord Jesus, when I am proud, remind me who You are and how small my strength is compared to Yours. When I am afraid, remind me of Your perfect love. When I am anxious, remind me of Your sovereign hand that holds my entire life and all that I consider precious. When I am sad, remind me of the eternal pleasures that You have given me, that no one can take away. When I have lost my way, remind me that You are the Good Shepherd and that the ground on which I stand right now is firm. Remind me of Your abiding presence, and that You will not allow my foot to slip as long as You are the one in whom I trust. Keep me from trusting in the strength of men, or in the comfort of good news. Keep my heart in tune with Yours. When I can't see the future, remind me that You hold the future in the palm of Your mighty hand. Remind me that You are living through me to accomplish Your purposes and that my purposes often try to take me away from Yours. Father, I love Your glory. There is no one greater than You. Magnify Your name among the nations. Bring unity to Your body so that the world will know that You send Your Son. Make the world come to know You are God and there is none besides You, and that You alone are Good.
I love You Jesus.
Jeremy
Sylvia and I arrived in Lincoln about 5:10 pm. It was so good to get here and find that Charity was blessed with a good day. She was tired when we saw her but Charity had been busy during the day.
She had Physical Therapy, and other therapy's as well. It seems she made some sounds with her vocal chords. Her heart rate and hemoglobin held steady through the day.
It sounded like she had slept for most of 12 hours last night! Sleep seems to be one of those things that no medicine can duplicate.
As I write these words now she its about 7:00 pm and she's sleeping with some Christian music playing slighly in her ears.
We pray for another good sleep tonight.
Sometimes answers to prayer come in small increments. Today we are so thankful to the Lord for another good night of rest for Charity. Her vital signs look mostly good. As she wakes up we expect she will be a bit more alert today as well. They may be reducing some of her medications (muscle relaxants) so that will be good as well.
We thank you Lord for this day of life and the privilege to be at Charity's side.
Today Charity's sister Heidi with her friends are hosting a fund raiser in Omaha for Charity. Sounds like they have an exciting event planned.
I'm not sure to what extent Charity is comprehending the huge outpouring of love and concern for her coming from all corners of the earth.
Thank the Lord for mostly uneventful days. Charity was pretty consistent this day in her vital signs and blood test. She had one spell in the late evening with muscle spasm and with it a rise in heart rate. They came on the right balance of medications and she relaxed and fell asleep.
One of her big challenges is to keep a positive spirit and persevere. Sofia and Isabella were able to visit her today. Sofia was very excited to come and see Mommy again.
Big blessings from the Lord come in small packages for Charity, like a good night sleep. Last night was an answer to our prayers and the prayers of many people around the world. Charity slept well. She began drowsing off to sleep around 6:30 pm last evening and by 8:30 was pretty well asleep. At 6:45 am she is still sleeping. I was with her during the night and the only things that woke her up were the few times they changed her position, gave medications. There were a few muscles cramps in her legs but she was asleep again before I finished stretching her legs.
Sleep is such an important part of her gaining new strength. The other two that man has some control over are, medications and nutrition. We want to address those issues with the medical staff in the days and weeks ahead. The fourth element for her regaining strength is the hand of God. That according to His Will He heal and give her body new strength.
May the Lord's name be honored in Bible believing churches across the globe today, Sunday July 15, Charity's 83rd day in the hospital. She would love to join you today at Trinity Evangelical Free Church in Holdrege, in God's time that day will arrive.
One of the blessings those of us around Charity have had in recent days is the increased activity Charity has shown in spelling and communicating. She is making good strides in lipping words, and in writing out her intentions with the gaze board (see the photo section for pictures on the gaze board).
One of Charity's most frequent communications has to do with food. We all know that from when she was at Mayo when she first lost her ability to talk.
Some of her food words have been:
- pizza
- chicken
- swedish fish
Today, Charity pulled a new word out of her bag of words. CHIPOTLE. Guess where she wants to go the first chance she has to go out to eat? Her Mom was with her and made the promise, "I'll take you out to Chipotle anytime you want when you get out of here!" I wonder, is Sylvia promising more than she will be able to deliver?
Today Charity starts her first full week at Madonna and we hope she is able to complete this week as well, if not better than the week she just ended.
Overall Charity's health is stable. Yesterday evening they got the urine culture results back from BryanLGH hospital that showed an infection. A type that doesn't respond to the antibiotic she is on now. There are only two antibiotics that are effective with this and each has some potential interaction with some of the medications she is on now.
Last night before sleep Charity had a very difficult spell with nausea and muscle cramps, almost like her whole body was one big cramp. She was very uncomfortable for a half hour and then conked out asleep, and stayed asleep all night. She is slowly waking up again this morning. We hope she can begin this week of therapy with vigor and effort.
God has been so good, giving Charity renewed health after her long stay at the BryanLGH intensive care unit.
Well being back yesterday was SO FUN. I really enjoyed seeing some of you again, especially those whom I haven't seen in a long while.
I am so sorry I can't be there more for your sakes. I love all of you deeply and remember, I need you. You are my brothers and sisters. Our roles have switched. I need you to be my comforters and teachers, and I need you to hold me up when I lack the strength to stand.
Today has been really tough. I don't even have the energy to express all that I am battling right now in my mind, but I am simply calling out to the Lord for deliverance and healing of my spirit, and asking that you all would continue to intercede for Charity, but also for me. I just feel like a huge target being peppered by everything that the enemy can think of.
Lord Jesus, do not let my enemy triumph over us. You are our refuge. We have no hope for deliverance except by Your mighty hand. If You are willing, You are able to deliver us from this trial. I desire Your glory above all else, because You have given me that desire. I desire for You to accomplish Your purposes for they are higher and better than ours. You have the authority to heal Charity. Her illness is subject to You. If You would simply command it to be gone, it would have to obey. I have no doubt in my heart about that. The wind and the waves obeyed Your voice. The demons shuttered convulsed and writhed in Your presence but could only leave upon Your command. Disease, blindess and paralysis all were subject to Your command. Even death is subject to you. All of this is impossible for me, but not for You my Lord and my God. What faith I have, You have given me, and all of it I place in You as Charity's healer. Your name is Jehovah Rapha. You are the Healer. I acknowledge Your mighty power in healing us spiritually from bondage to sin and death and the certainty of condemnation outside of Christ. You have healed us in that way, and because of what You have done, You are our greatest joy. But I call on Your name as our Healer because I love my wife. I miss her even when I am with her because she is in a prison that I cannot set her free from. She is my companion and my lover. You put us together, and I praise You for that. I praise You that I get to be here with her in this trail. I humbly ask for You, the only One who can to heal her body. I know that You can. Will You?
Even so, Father, Your will be done on earth as it is in heaven. Thank you for the opportunity to say those words after the example of Your Son who I love and through whom I love You.
Give me the grace to get through this evening, and the grace to stand tomorrow. I simply need You. My flesh is worthless. May Your Spirit renew me, and control me this day and tomorrow and tomorrow and tomorrow.
Your son.
Jeremy
I’m Charity’s mom. I haven’t written an update simply because it is too hard. I try to imagine the picture the blog is painting of my daughter. Sometimes it is hard to know if we are portraying facts clearly. My emotions would get in the way of presenting things logically as the men involved do. Let me share my perspective.
This morning we left Charity at Madonna. She was lying in the bed. She did not look at me directly in the eyes, rather at points in the air.
“It is the medications,” I tell myself. But my heart breaks. I want her eyes to look into mine and snap and speak volumes like the Charity that is my little girl.
She is in a gray warm up Madonna rehab uniform. It is a welcome change from the hospital gown. She is so very thin. Tubes seem to attach everywhere to her body. A clear tube is attached to her trach tube and moves with her breathing. Today they tried to let her breathe on her own, without the machine. The tube is still there, but she is doing well on her own. I thank God.
The physical therapists come in and it takes two of them to raise her into a sitting position on the edge of the bed. They are very good. She is like a rag doll with her chin down on her chest. They tell her to lift her head. I am cheering, “You can do it Charity.” It is very hard, but she lifts it several times and then it flops back down. Charity is drained of energy after that.
Her movements continue and we are so grateful when we see her arm lift. First her right, then her left. She lifts it up at the elbow and back down again.
She suffers terribly from muscle spasms. Her arms, legs, neck, head and body convulse. It is hard to watch.
We miss her voice. How we pray that she will regain the muscles and ability to talk, swallow and eat again.
Charity is affected emotionally by the medications, the lesion and her situation. She cries. I cry with her. I have cried buckets of tears. We pray. We pray so much.
She is always conscious of her love for her children and for Jeremy. It tortures her and it challenges her to work hard. Then almost unexpectedly we get a glimpse of our girl. She spells, something like Chipolte. She smiles, even laughs a little. It is like sunshine lights all of our hearts. For those moments, life is good again.
We love Charity completely. We desire her healing, but we are aware that we can do no more than pray as Christ Himself prayed. “All things are possible with you. Father, let this cup pass from me, nevertheless, not my will, but thine be done.”
We gather as we often do around her bed. We hold on to her, and pray together. Phil, Jeremy and myself.
This morning Phil and I left for Kansas City. Jeremy looks so alone holding on to Charity’s hand. I know what I know. God is good, faithful and loving. They are not alone. Jesus is there. The faithful prayers of the saints continue. Thank you body of Christ for holding us up. June, the unsung hero, is watching the girls. Happy Birthday, June. Jeremy’s dad, Rodney is there for a week. All of you are much appreciated.
Charity breathed on her own all night long. She is completely off the ventilator and will not return as long as things remain steady. Her hemoglobin is at 10.4 this morning. That is the highest it has been in days.
This morning Charity had a headache. She was sat up by her PT people and got incredibly dizzy, and her blood pressure fell a bit. It was 88/60 at its lowest. That is only two points off of her norm, but it is frustrating nonetheless for Charity to feel that way. She wants more than anything to just get up and walk.
I am very tired today. I didn't sleep hardly at all. Neither did Charity. I am the only one who can stay with Charity at this point over night, and I will be doing so all week long. I have a bad feeling that sleep is not going to be something that I get alot of this week.
Our neurologist just came in and is going to begin to taper her steroids on a 1 miligram per week taper. Please be vigilant in prayer about how Charity will react to that. We don't want her to lose anything she has gained, but there is a real possibility that she will increase in her strength being off of the steroids. We have to try so PLEASE PLEASE PRAY ALOT.
We also need to pray for a neurologist that show personal interest in Charity and that will follow her with great interest and concern. The doctor that just came in is the opposite of that. I think we used the term "fast food neurology." He pretty much told us not to expect to see him very much more than once a week.
Just letting all of you know what is going on today.
Jeremy
Charity did really well in therapy. She had AWESOME head control and was looking around. She looked quite normal sitting up for a few moments.
Also, they leaned her forward, and she pulled herself back up on her own into a sitting posture twice. I haven't seen her do that before since she was walking.
She also used her triceps quite well to assist in washing her own face. It was a good session and I wanted you all to know that.
Medically she is doing very well, and she is tolerating thus far the slow taper of steroids. She seems alert and aware, at least more so than yesterday.
Praise God.
Jeremy
Today is Day 87 for Charity in hospital. Today I talked with Jeremy by phone. This is what I know from today as reported by Jeremy.
- They got Charity into one of those special standing up machines. She did good but got tired out from it.
- She moved muscles in her forearms and held her arms up.
- Jeremy was encouraged by her progress today.
Justin has done some revisions at the CharityGeorge.com site. Check them out.
What are the family and friends turns taking place this weekend?
Tonight Jeanna Popple is staying with Charity. Sylvia and I are in Kansas City. Tomorrow Justin will drive to Lincoln at 6:00 am and stay until Saturday morning. Connie Bird is staying with Charity Friday night. Heidi is planning on visiting sometime this weekend. Sylvia and I will go to Lincoln Saturday and stay until Monday am doctor visits. Jeremy will be with his church youth on Friday and in Holdrege through the week-end.
Well, it seems like another good day in the books here so far. I have not been without concerns though. Charity has had three bowel movements which is of concern
Jesus forgive me for the attitude that I have had over the past few days. I just feel like I have been complaining. I don't want to complain at all. I know who You are. I know that what You have given me in Your Son is beyond what I could possibly imagine or comprehend, and I wait with great expectation to one day bask in Your presence and to have You wipe away my tears one by one. I don't know You well enough though. I am not satisfied with my lack of knowledge of You. I will only know You as You allow me to see and to know You, but I want more of You, so that my complaining will melt away in the beauty and pleasure of Your presence. What is there to complain about if I have You, all of You. I shall not want, because You are with me, and yet I want and want and want. Forgive me for wanting things apart from You, and instead let me enjoy the good things that You have given me because of You. Shift my enjoyment of the pleasures of this life from the intrinsic value of those things to the reality that is You, my God who has given them to me, but only for a time. Build into us a trust that allows us to hold the most precious things in our lives up to You in complete trust and in sacrifice to Your great name, but only with unbroken smiles.
You are the God of gladness. Teach me to be glad. Teach me to be supremely happy in You. I want to be happy, but I don't want happiness for happiness sake. I want that happiness to be infectious into the lives of others because it is about You and no other thing or person.
I have asked You for specific things pertaining to Your glory. I have asked to be used by You to greatly magnify Your name among the nations. I confess my great weakness, and expect therefore to see Your great strength manifested in me and through me. There is no stage big enough or more appropriate on this earth than that of NATIONS. Therefore, continue to glorify YOURSELF among the nations through our family.
bring our enemy to despair as You give us victory and use us, as You dance over us with joy.
We love You Jesus.
Jeremy
I've been on the phone with Jeremy, Justin and family friend Connie who is staying with Charity overnight. This is what I know from them:
1. Charity's hemoglobin was 11.5 yesterday (excellent!) and today was down .5 to 11.0. At first that was a concern to us, 11 is still very good but we didn't want it to indicate a trend (as happened on another Friday). But we understand that since they had difficulty getting the second sample the difference could just be a technical variation due to method in getting the blood.
2. Charity was fitted with a laser light on her glasses. She can use the light to point at things, (letters, things, people etc.) I understand she was chasing Jeremy around the room with the light trying to shine it in his face. She also played tic-tac-toe with Justin and Sofia.
Now isn't that creative? And its so simple. We should have thought of that a long time ago! That's what I like about Madonna. They try to invent, create, fit things that meet the needs of the individual and give them hope.
3. If you lift your arm and let your hand hang limp at the wrist your arm looks like a rag doll. Today in therapy they suceeded in getting Charity to hold her wrist erect. I understand that is significant in that it indicates more potential avenues to recovering more abilities.
4. It seems Charity went to sleep well tonight. I didn't hear of any significant muscle spasms. We hope it doesn't change during the night.
Family and Caregivers comings and goings.
- Jeremy was able to join his youth group in GrandIsland!
- Connie B. is staying with Charity overnight. Justin is in Lincoln overnight as well in case we need another backup.
- Sylvia and I leave for Lincoln early tomorrow at the same time Justin leaves Lincoln to return to Kansas City. We'll probably meet along the road for coffee together.
- Charity's sister Heidi is planning on spending time with her sister tomorrow afternoon.
- I will return to KC Monday after doctor rounds. Sylvia will stay the week in Lincoln.
Today I got all teary eyed when I realized that Charity has finished her FIRST COMPLETE FIVE DAY WEEK of therapy! What a milestone to finish five days without some crisis happening to tear it apart.
Thank you Lord for another week, another day that we have Charity with us, another day of stability, another day of giving us those micro steps of progress. Thank you for friends who haven't grown tired of praying and caring.
-by Phil
Sylvia and I arrived at Charity's bedside around 11:30 this morning. While on our way to Lincoln we met Justin on his way to Kansas City. We had coffee together (and of course Justin wanted Dad to buy him a breakfast).
We found Charity to be a lot thinner than when we had left her the week-end before. That is mostly due to the fact that when she was a BryanLGH ICU they had hydrated her with a lot of fluids. Her hands and face got real puffy. Today most of the extra fluid was gone so it was normal that she would look a lot thinner.
She slept good last night. Overall her vital signs seem fairly good. Her hemoglobin is staying close to 11, her heart rate and blood pressure usually within where we like it. We are watching her closely to make sure she doesn't dehydrate.
Charity seemed quite distant in her responses but we did get her to smile a few times. Medications and tiredness affect this so much.
She seemed pleased to have finished her first week in rehab and indicated she was wanting to work hard on another week next week.
I showed Charity some of the features Justin added to her web site and we took time to pray together (Charity, Sylvia, Heidi and myself) for the others who are in a deep suffering themselves. Our hearts go out to those who are battling leukemia, cancer, fear etc. She seemed to appreciate praying for others and indicated she would like to do this again in the future.
While we did find Charity in a mostly stable situation, we don't want people to think that it's just smooth sailing. They situation is always changing, little things come up and we all begin to question what might be happening. Typical things that happen are, spasms, heart rate rising, colored urine, diarrhea, blood sugar level, abdominal pain, non responsiveness. Frequently the medical response it to give a medication for any situation. We are real hesitant to do that because it just creates a new "snowball" of side effects. The result is that staying at Charity's bedside for any length of time has a tendency to create an anxiety in oneself.
Something else noteworthy Sylvia and I observed when arriving back with Charity this week-end is that Charity is not on the respirator anymore. In fact they have the trach tube capped and she is breathing through her mouth and nose as all of us do. This allows Charity to make sounds when she cries or other moments. Breathing normally she still has excellent oxygen levels.
Today we noticed that a good amount of the pain Charity has is from bed sores. The painful ones are due to the long time in bed and recent diarrhea. We'll keep a watch on this and see that the hospital staff attends to this.
This evening they have also started to give her fluids via and IV. This is to help prevent dehydration.
This morning during doctor rounds we got the blood count report. Charity's hemoglobin had dropped to 8.6! That is really puzzling.
All her other vital signs are stable. Her blood pressure, heart rate, oxygen.
The factors that could have affected that are: they have been giving her IV fluids. That will dilute the hemoglobin count. She has also had diarrhea, and some blood in the urine and then there are always laboratory (technical) differences.
They will be checking the hemoglobin again this noon. They are prepared to give her blood if needed. Why does this happen? What's happening that makes her hemoglobin drop from 11.5 to 8.6 in 48 hours?
Charity slept pretty well last night. She woke up emotionally very sad and with some pain from the diarrhea and leg cramps.
She had OT (occupational therapy) this morning. I marveled as I watched the therapist take Charity's right arm through a bunch of motions. Her muscles are weak but she was using her triceps with great consistency. I think this also greatly encouraged Charity. When she sees herself doing things this helps so much. It helps her get her thoughts off of her dire situation.
I am hoping to watch a DVD today with her since she hasn't been able to be in church for three months now, neither have we.
TODAY IS JEREMY'S BIRTHDAY!! HAPPY BIRTHDAY JEREMY.
This may also be one of Charity's laments when waking up this morning. Not being able to celebrate his birthday as a normal couple would.
The blood test at noon showed Charity's hemoglobin count at 10.1 That's good and in her normal range. So it seems the early morning one was a faulty test.
Charity had Speech therapy and did some good mouth movements. The therapist also got her to make some breathing out to make some sounds with her vocal chords. At one point Charity started crying, and of course that made her breathe out even more. In fact the therapist said that the crying was a good way to get strong breathing out and making sounds. So later in the day I found her crying. I tried to find what was wrong, and discovered was making herself cry on purpose so she could make sounds with her vocal chord.
I asked her, Charity, are you thinking sad thoughts so you can cry on purpose to make sounds? She nodded her head, yes.
This afternoon the Madonna staff got Charity into her wheel chair for an outing. This time (different from last week) had no respirator, no feeding tubes, no IV tubes. We wheeled her outdoors, down the sidewalk and parking lot, ALL THE WAY TO OUR APARTMENT!
Up the sidewalk to the entry we went and at the door a squealing Sofia greeted us at the door. Into the apartment we went and Charity, "was home". We sat around, even had some company and then Isabella started into her antics, trying to work herself into crawling. It was so funny even Charity smiled and laughed.
But today was Jeremy's birthday. His mom had fixed up a cake with 30 candles on it. Sofia helped Dad blow out the candles. This was the first time in so many days, so many months that the Jeremy and Charity George family was able to spend time together in a HOME and not in a hospital room.
The visit went well, no medical problems. At the end Charity was tired and returned to her room BUT greatly inspired. Her rehab has taken on a whole new purpose, "get home to the family."
See some photos of her visit at the PHOTOS link under the Madonna Rehab Album.
Thank you Lord for this inspiring day. We know that many more days are ahead, many more ups and downs. It is still a very difficult battle with many uncertainties, but Charity was able to live in person some real purposes for fighting on.
After her visit yesterday to our apartment Charity was tired when she got back to her hospital room. They got her ready for bed and gave her evening medications and she fell peacefully asleep. About an hour later she woke and began looking from side to side. She seemed to be bewildered, looking for something she couldn't find and it was very difficult to get any responses from her. This was accompanied by her normal spasms.
Sylvia stayed with her during the night and said Charity had continued throughout the night to toss her head and that she and the staff didn't get very many responses from her at all.
The Doctor came by this morning and is checking through her medications to see if something could be contributing to her bewildered/unreachable attitude. They are also doing lab tests to check her abdomen and lower GI tract for the cause of yesterday's pains.
Days like today are particularly difficult moments to sit at Charity's side. Just a normal day is draining physically and emotionally. I sat with Charity all Sunday morning. By noon I was totally drained. Things went reasonably well but it's usually not just a peaceful time. Every day presents a new set of issues, perplexities, uncertainties, anxiety.
Pray this week for those caring for Charity (Sylvia and Jeremy). Sylvia and Jeremy both appreciate and enjoy visits from friends. It helps their own emotional balance and helps pass the long hours (as long as visitors are understanding of the situation and don't all come at the same time).
Yesterday may have been the best day Charity has had since she was completely normal. That is followed of course by today which seems to be in my opinion another crushing blow.
Charity is doing ok, but her hemoglobin has now dropped from 10.1 to 9.0 in a day, and the thing that is most concerning about that is that it comes with an almost complete unresponsiveness.
Charity will not do anything today. She looks around a bit, but will not respond to questions or to usual stimuli.
I am not freaking out, but I am very concerned. We have been blessed with a wonderful charge nurse who is doing everything in her power to work for an answer and a solution as quickly as possible. We are thrilled with her, and the therapists here, but the medical attention Charity is getting from doctors is just inadequate in some ways.
So we need continued prayer. We need you to intercede on our behalf because as it was said today, there are alot of full time ministry people whose ministries and lives have been completely interrupted.
God doesn't need us to be doing anything to accomplish His purposes, but I am convinced that the enemy is delighting in our suffering, even as God delights in us as we endure it.
I am feeling pretty blah today. This year is coming up quickly. I feel so excited about what God is leading me to teach and the specific areas that He is giving me to challenge the youth in. I feel frustrated because I just want to pour my heart into that work, but am so distracted whenever I sit down to do anything. It seems that every time I sit down to work on it, something of concern arises or I am needed in some capacity that takes precedence.
I just need all of us to be praying that Jesus would not allow our enemy to have any victory in our minds, hearts, bodies or ministries. He has all authority, therefore I confess that the enemy has no authority oever us, because we are under Christ's authority.
Jesus, don't let the enemy have any victory here. May he be perplexed, crushed and disappointed as he watches Your mighty power displayed in us and through us. May he be dismayed at the victory that we have in You. May Your smile continue to shine on us, and may it be reflected by the smile of our heart as we rest in You. Give us gladness and freedom of soul. Crush our enemy under our feet, and be glorified in it.
In Jesus name.
Amen.
Jeremy
-by Phil
Sylvia just called me. I'm in Kansas City, she's with Charity for the night in Lincoln.
Charity has continued to be almost totally unresponsive today and moving very little of her body. She doesn't even move her thumb. She deosn't seem able to nod or shake her head in response to questions.
This day is especially troubling to us. We don't understand the cause, and there is not a lot of medical help at a place like Madonna and not any neurology team.
There was one time at Mayo where Charity did regress to the place of not responding and not moving. She came back from that. We don't know if these are similar episodes. The only thing that seems common to both is that these both are related to a time when she doesn't sleep.
Lord, as we have done many times already, we release Charity in your hands. I ask that You surround her with your peace. Give her assurance of who she is in You. Surround Sylvia and Jeremy with your peace and give them your strength to persevere another night, and another tomorrow.
I called Sylvia just before 7 this morning. Charity did sleep some during the night which is good. However her heart rate seemed to be rather high, around 150 sometime. Charity is still not very responsive at all or moving any limbs, thumbs etc. We have some questions for the doctors that we have observed in previous weeks with Charity.
-Phil
Charity is not doing well again. All she can do at this point is look around the room.
Her heart resting heart rate keeps going up, with no clear explanation as to why that may be happening. I am pretty sure we are the only ones trying to figure that out.
Please pray for Charity. I think she is terrified, and I can't stop thinking of the terrors she is enduring.
Jesus, meet Charity in the solitude of her mind and give her peace. Speak to her heart and may she sense Your presence like never before. Draw her into an unceasing conversation so she is comforted by Your presence, and finds relief in expressing her heart to You. May she find joy in relating to You. Inexpressible Joy.
I am feeling pretty numb Jesus. Rescue us.
In Jesus Name. Amen.
Jeremy
There seem to be some very significant things happening in Lincoln. I want to be there with my wife, my son-in-law and my daughter as we go through these next few days. I've been struggling all day with deciding if I should go or not. It was settled when I learned that they have done another CT scan of Charity's head and plan to do another one tomorrow morning with contrast. The neurologist who is supposed to report on it tomorrow hasn't given us encouraging reports in the past. We do want to know and hear the true facts. But we want to make sure the whole history and picture of Charity's case is taken into consideration before assumptions are stated as facts.
-Phil
Charity rested quite well last night and this has had a positive effect. Our friend Lynn F. stayed with Charity last night and reported that Charity was slightly more responsive this morning and was nodding and shaking her head in response to questions.
This morning they took Charity for another CT scan to be done at the BryanLGH hospital. I understand it is supposed to be with enhancement of her abdomen. They are trying to determine what is going on there. The xray's yesterday showed possible some air, etc. They are checking for peritonitis as well.
The CT scan done a couple days ago is still under discussion. We hope to talk with a neurologist today. Some who have read it seem to think there is enlargement of the brain stem lesion (mass). Others see that there is nothing changed to be alarmed about.
What is a brain stem lesion (or mass)? From what we understand in our past three month "medical course" is that a lesion is NOT a tumor. Some people erroneously refer to this as a brain tumor. A lesion is a wound, injury, mass, spot, that is detected on the brain stem. The frantic search of the past three months has been to find the CAUSE of that lesion. To date no one knows what has CAUSED the lesion. Possible causes are
- a benign tumor
- a malignant tumor (glioma tumor)
- a stroke
- a bleeding of a vein malformation (cavernous hemangioma)
- an MS related disease
- an infection
- some other rare inflammatory disease
Because of its extremely delicate location in the brain stem an otherwise innocuous disease can cause devastating destruction.
My "mission" in these next three days is to see if our family can secure the help of a neurologist in the area who can oversee Charity from a neurological perspective. One of our frustrations over the past months is that she gets passed from one doctor to another, from one team to another and so many things get missed int he transfer. We yearn to see more continuity in her care. Someone who can follow her case from beginning to now and willing to consult with other experts across the country.
Charity has shown some improvements today! She has started to nod her head again and early this afternoon she moved her thumb. She is a bit more attentive and is answering question with a nod or head shake.
The Physical therapist and Occupational therapist were able to get Charity to participate a lot more actively in therapy.
The battle is definitely not over. We don't even have an end in sight. It's amazing the strength and perseverance the Lord has provided us in these three months.
Jeremy and I are trying to organize and divide up our time so we can each still attend to some of our ministry responsibilities during the times we are here in Lincoln.
This afternoon I will be talking with a neurologist to try to get some continuity in neurological care for Charity.
So today we completed Charity's 93rd day of hospital. Once again we are glad for another day of life with her. She is showing more responses since her Monday "crash". She is usually nodding affirmations or shaking her head for no in response. She has moved her thumb and arm. She is still quite distant and seems to struggle with understanding those around her.
We did take her to the apartment again and she may have given a slight smile during that visit. The only certain thing about the longterm outlook for Charity is that it will be long and uncertain. We would love to see the day when she doesn't have these "crashes" but only God knows if this will be something that continues to happen for a long time.
I did get a conference with a neurologist and it looks like we should be getting better continuity and neurological oversight for Charity. When I got back from the neurologist, on of his colleagues was at the Madonna checking on Charity and with a review of the MRI. Putting everything together it seems this latest episode of Charity's is not a neurological event. The battle is still staying ahead of the medical/physiological game.
A GI doctor visited her and reported that some air bubbles in her colon were not cause for surgery. They are however a very rare occurrence and he said he would have to do more research on it.
We have a family meeting requested for sometime Friday with the Rehab team here at Madonna. We want to review where Charity is and where everyone is planning to get with her.
Sunday is Jeremy and Charity's 7th anniversary. The week after on August 5 is Charity's 27th birthday.
Sylvia is staying with Charity for the night. I'm very glad I came up for these week days. I've been able to do a lot for my daughter as well as learning to keep up some of my responsibilities "out of the office".
Sometimes I feel that instead of making, 3 steps forward and only 2 backward = a net gain of one step, Charity seems to make two steps forward stay stable for a while and then makes two steps backward again.
Today she seems to be making improvement in her movements and in nodding inspite of the fact that she didn't have the best of sleeping last night. Sylvia stayed with her and said she may have had 2-3 hours of sleep.
Each time Charity does rebound she seems to rebound in movement, clarity in communication but usually not that much in overall strength.
The Doctor rounds today revealed that Charity has had a urinary tract infection (different from the previous and easier to treat). That infection could very well be the reason for her downturn on Monday. Any physical event seems to wipe her out and set her back in that total "locked-in" state. She seems to be coming out of that in these last two days.
We will be meeting as a family with the team here at Madonna on Friday at 11:00 am.
We appreciate the encouragement all of you have been to Charity and to us over the past months. I don't know how much we or anyone else will have the strength to persevere for a very long "ride". I guess that's why we don't know the future and just "wait on the Lord" for each day at a time.
Thank you for each of you who sends a note to Charity. We do read them to her, often I try to have her read along. She is almost always eager to hear from you, so don't feel your notes are written in vain.
-Phil
This is the first time I've been able to be in Lincoln during the week days when they are doing rehab therapy with Charity full time. I was able to observe most of those sessions. I'm amazed at what they are able to get a feeble body like Charity's to do. That doesn't mean she is getting up out of her bed and walking. What I was able to see was the therapists taking a seemingly limp lifeless limb and find muscles that moved.
Here's what happened in the Therapy gym this morning with Charity.
Charity sits on the edge of a gym mattress, one therapist holding her from behind another from the front. They balance her in a sitting position encouraging her to hold her head up. Her feet are on a platform, but her ankles buckle, toes curl. She has no smiles today barely any expressions but sometimes a nod and she held her head up better today.
Then they slowly remove their arms to see if Charity will keep sitting. When she leans over one way or another they catch her from falling. Then they place a mirror in front of her so she can see herself and hold her balance better. She does hold herself sitting for a few short seconds.
They take her through the motions of brushing teeth and then leaning to the left and then to the right. She is pretty well tired out by the time she ends the 30 minute session.
Following the rest of the day was a half hour of speech therapy then rest periods interspersed with other sessions of physical therapy, occupational therapy, speech therapy.
In the late afternoon she is put in the wheel chair and we make a visit to the Apartment where her kids wait for her and today we had friends from Holdrege, Matt and Lori Almand and daughter Sydney.
When we return to the hospital Charity is tired from the day but not ready to go back to her room so we wheel around the halls of the hospital.
In the evening they get her ready for bed, we have a time to read the Bible and pray together and then we wait for her to fall asleep. Some nights that comes right away. Other nights its preceeded by a struggle with muscle spasms. Tonight she seems reasonable at peace but unable to sleep yet. We pray that God would graciously grant her sleep tonight.
-Phil
Last night just as I left Charity and Sylvia in the room I had a final talk with Charity and she opened her mouth and cried. She cried one of those big cries when big gasps of air pass her vocal chords.
We don't try to make Charity cry, but I was glad to hear these cries again because its been several days when she has neither cried nor laughed and barely every smiled. Her emotional display has been almost totally flat.
We know that when she is able to cry, she will also be able to smile and laugh. The tears may rip our hearts but there is also a sense of thanks and appreciation for tears.
Then this morning at 7:00 when I changed places with Sylvia so she could go get some sleep I read the Bible and also a devotional written by Joni Earkeckson. It happened to be "TEARS". Charity and I read that together, and of course there were some tears. We prayed then and thanked God for this day and the tears it would bring and also we hope for the smiles and laughs that we may be able to have in this day as well.
At 11:00 am we get together with the rehab team for a conference. This includes there therapists, nurses, case manager etc. We want to look for some ways to help Charity deal with muscle spasms, sleep better, help her strengthen her body.
Thanks again to all of you who pray and help us hold up Charity's arms during this time.
-Phil
Today Charity is doing well. She is coming back almost to where she was before the Sunday night & Monday relapse. Charity has improved in her responses to people and is back to using the gaze board. She is however still having difficulty being fully precise in composing words and in using the laser pointer.
Our 11 am meeting with the rehab team went well.
On the Physical Therapy and Occupational Therapy side Charity is showing determination in therapy and overall improvement. They see her strength actually greater in her left leg than her right. They see progress. This was encouraging to hear some objective evaluations and most of them were positive.
We had prepared with Charity before the meeting some of her greatest concerns. We brought them to the team. Charity’s biggest one was the rash/sores she has on her back-side. We also addressed the issue of muscle spasms. These two things together have such an impact on Charity’s well being. If she’s hurting from spasms or sores she won’t sleep well. If she doesn’t sleep well she fatigues. With fatigue she can get infections or just not be able to perform at all. We still don’t know exactly why Charity had this “regression” on Monday but it may just be due to fatigue and infection.
So the meeting was a good encouragement to ALL of us there. (Jeremy, Charity, Phil, Sylvia and rehab staff). A praise to the Lord.
I was also at Charity’s morning therapy before the meeting. They got her into the “standing machine”. She has done this one other time. It has a sling, braces etc. to help lift Charity up and then hold her in a standing position. They work with her to keep her head up, keep upper trunk straight. Charity stood for 12 minutes, then took a rest and stood for another 9 minutes and during this time her blood pressure increased correctly rather than dropping as it did the first time. While Charity was standing for those 21 minutes, one therapist applied “kinesic” tape to her arms. That’s a special stretch tape that is supposed to activate her nerves and muscle on the arms to remind them to move even when she is not in therapy. It will stay on for several days. They can use this tape on shoulder muscles and other muscles of the body.
She has cried several times today, and just as I thought it would happen, she also laughed today during her therapy, (those of you know her in her condition now, realize her laugh is something like an airy chuckle, someday we hope they will be big hearty laughs again.)
This morning I was reading through the notes from this website from the last couple of days. I usually place the computer where Charity can read the notes herself and then I read them out loud with her. We came to the note from her friend Myrna and we both just started crying together. (It’s a good thing to cry). I’ve since found a photo of Charity and Myrna made less than a month from Charity’s hospitalization when both were visiting us in Kansas City. I’ve printed it up and will put it up in Charity’s room. So Myrna you are hanging up there on Charity’s wall together with the kids. (see photo in Madonna Rehab album)
I stayed with Charity through the night last night. It was a rough night with little sleep. She may have gotten a couple of hours scattered here and there. It's hard to really know what causes that.
- probably a big part is pain from the bed sores
- another part from pain from the leg cramping. Although other spasms in her body were very few.
- another factor could be anxiety. Yesterday she did a whole lot of crying, or a type of whimpering.
- Even in the midst of being tired she doesn't seem to be able to close her eyes.
I and the nurses tried all kinds of things. Reading, listening to music, stretching muscles and even some sleeping medication.
So with a sleepless night we risk having a very tired girl at therapy, we risk fatigue, and of course that's always a risk for some kind of relapse.
-Phil
I arrived at 9:00am this morning. Charity has been crying since then and has not stopped. It is now 1:05pm. I am exhausted already and I am not even halfway through the day here. I just learned that all but a few minutes of last night was spent like this as well.
The reason, I believe, for all of this is because she has been off of her anti depressant.
So I ask for prayer about just getting through today and tomorrow. This is very diffictul personally for me because tomorrow is our anniversary and I don't want it to be spent like this.
Jesus, I sumit to Your plan. I submit to Your will about today and tomorrow. If this is the way it is going to be, then so be it. Amen. I am just asking that You will Intervene and cause her to be calm enough to sleep. Please Jesus, we need you.
Jeremy
Charity is suffering. SUFFERING. She is in GREAT pain. She is sweating. She is crying. Her heart rate has been over 120 for some time now. I have net yet seen her this uncomfortable.
I am still thinking that absence of her anti depressant has alot to do with this, but she also has bed sores. Apparently, a person in her condition can develop hypersensitivity to pain and it has developed over the last two days.
I don't know if anyone out there has any creative ideas for us but we would welcome them. Please just post a comment if you have any suggestions. We really don't know what to do.
Jeremy
Today is Jeremy and Charity’s seventh anniversary. It is not off to a good start. Charity had another very difficult night last night. Sylvia stayed with her last night. Charity slept a bit from 10:30-11:30 but not much more than that. Her heart was in a normal range while she slept but during the night kept rising and staying high. From 3:00am it was rarely below 150 and peaked around 167. Her blood pressure seemed to hold well. We are not doctors but that doesn’t seem good. To us it might be pain related, but also Charity has been restless and sleepless for so long now. They tried about every medication allowed on her doctor orders but nothing seemed to help to calm her down. They tried getting ahold of a doctor but at 7:00am I don’t think any had been in yet. Sylvia also tried to call me during the night but my phone was either silenced or it wasn’t getting reception. She did get ahold of Jeremy at 6:30 and we all came over. We are waiting now for the doctor rounds and Charity has just now fallen asleep and her heart has come down to 130. If she slept all their anniversary that would be a great gift.
Sylvia and I were planning to try to get to church this morning. It hasn’t been over a month when Charity was at Mayo that we were able to go last. I don’t know if we’ll be able to now or not.
-Phil
The doctors don't have a whole lot to offer for solutions. They are checking for any infections that could be provoking her anxiety, elevated HR, pain. This morning she had several HR spikes into the 170's, some of them lasting longer. Then at 9:30 she fell asleep and her rate lowered to 110. We hope, but don't know, if that sleep will last a while.
This is stressful on all of us. It puts us in a position of staying by a person who is suffering yet not a whole lot we can do about it.
Charity slept for about 2 hours and 10 minutes. Her HR stayed down to the low 100's during that time. Jeremy got some sleep as well.
She is awake and her HR has increased to about 150. She still does a lot of continuous crying. Jeremy is at her side. There is just not a whole lot a person can do, or it seems. They are trying to keep up on the pain medication and not bet behind on that.
I know this is a terribly discouraging day for Jeremy, their anniversary and hardly able to share much of it on even a minimal level. I wonder if Charity is aware of it being their anniversary? She probably does more than we realize.
We are asking for today that visitors check with the nursing desk before entering her room. We can visit with you in the lounges of the hospital but until things change those wanting to visit Charity may not be able to do that. I do know that when he has a break, Jeremy does enjoy visiting with his close friends. As you pray for Charity pray for Jeremy, this is a really rough day.
-Phil
What does a man say to the woman who God used to save his life? God has used Charity as a stabilzing force in my life. I have always been desperate for the kind of love that Charity has provided for me and our daughters for seven years now.
My wife is a follower of Jesus. I am so proud of her. I just want you all to know that.
Thank you Charity for loving me so well, giving us two beautiful daughters and for allowing God to use you to change my life forever. I am the man I am today because God gave you to me.
Thank you my love.
Jeremy
Jeremy,
I remember the tears the day I walked Charity down the aisle to join you seven years ago. Those were tears of sadness in seeing my "baby" moving on in life and tears of joy to entrust her in your care.
Today I'm in tears because we were powerless to help you two celebrate the anniversary we had hoped on this our first year back in the States. Sylvia had arranged with Charity to take your kids for this week-end that never happened.
It would be a mistake for me to focus on what could have been.
It would be an error for me to lament what we don’t have.
Although my daughter today is only a shadow of the woman she was seven years ago, today standing by her side is a man, dependent on the Lord, fulfilling with honor that anguishing part of the wedding vow “in sickness and in health”.
Since April 24 we, (principally you, Sylvia myself) have been thrown together into the oddest of circumstances. It’s not always been easy but we have journeyed shoulder to shoulder going from crisis to crisis as we have fervently fought for the health of Charity. God has been good, not only in guiding us in the 100’s of medical and logistical decisions but also in just helping us survive and keep up our interpersonal relationships. I treasure your friendship. I will always be proud to call you my son-in-law.
- Your Father-in-law
Charity's 98th day in the hospital begins today.
(Information as reported by phone from Sylvia to Phil)
MEDICAL SUMMARY
- Charity slept a good long drugged sleep last night
- Her heart rate continues to be rather elevated. They have the monitor set at 170 to alert the nursing staff when it peaks above that.
- Today she continues to do a lot of moaning and groaning.
- She seems to have evident pain in her stomach
- Her physician feels her crying and moaning is still due to her being taken off of the selexa anti-depressant earlier this week. (it had been pulled by the GI Dr. because of potential risks to her GI tract. They have returned her to that medication and will try to monitor and treat any side effects).
- One of the neurologists visited Charity this morning and there is still discussion on whether the CTscan last week reveals any change in the lesion. The scans are being reviewed at Mayo as well.
- Charity's oxygen level once in a while drop below 90. She seems to have some congestion. She did give a good cough today and the O2 level returned to normal. They may possibly add oxygen to her breathing.
- Today she will have a CT scan of her abdomen, a pic line changed, and the trach tube changed.
- Charity is still not doing real well, its questionable whether she will be able to do any therapy today.
PRACTICAL MATTERS.
- Jeremy was able to return to Holdrege last night together with his mother and his two girls. He will be involved with his youth ministry responsibilities.
- This leaves Sylvia totally alone in Lincoln with Charity. I think there are some friends coming to give her a helping hand with breaks so she can sleep and eat.
- Justin (and his friend Fabio from Italy) will join Sylvia sometime on Tuesday and bring Sylvia back to Kansas City on Wednesday.
- Jeremy will return to Lincoln on Wednesday.
FOR THOSE WISHING TO VISIT CHARITY OR FAMILY
- The situation is very delicate in Lincoln. We treasure your visits but it would really help us if we had advanced word if you plan to visit.
- You may or may not be able to visit Charity herself. Much depends on what's happening at the moment. Please be understanding of this.
- There is a family visiting room close to Charity's room where we can visit when there is a break, or when there is a family member to take turns.
- We continue to welcome the help that close friends of Charity or Sylvia have been in the past weeks and months to take a turn at Charity's side. We appreciate so much any help you are able to give to keep us strong as well. Contact Sylvia, Phil or Jeremy if you have available days in the future.
PLANNED SCHEDULE
- We are trying to schedule our lives and care for Charity tentatively in this direction.
1. Jeremy will try to be with his church and responsiblities over weekends and until Wednesdays.
2. Phil will be in Lincoln from Friday nights until Monday after doctor rounds.
3. Sylvia will be in Lincoln when Jeremy is gone. (This would be a good time for those able to help Sylvia).
4. Jeremy will be in Lincoln Wednesdays to week-ends (This would be a good time for those able to help Jeremy)
5. We'll try this general schedule if possible even with minor crisis. If something major happens plans change.
(Information from a recent phone call from Sylvia to Phil)
Charity continues to be about the same, crying, pain etc. She is having an increase of pflem and her oxygen levels got down. They need to suction her more fequently. Tomorrow they will do a CT scan and examine the lungs and abdomen. They will be checking to verify that there is no pulminary embolism.
Her blood work and other testing is checking out OK.
The xray done yesterday shows everything is clear.
They have Charity on the monitor with alarms to detect elevated heart rate, or low oxygen.
Sylvia did have a friend stop by today who could stay with Charity while Sylvia went for a nap. For meals she has had to just leave Charity in the care of the nurses and take some time off.
Justin will arrive in Lincoln around 7 pm and Jeremy is planning on getting back sometime on Wednesday.
I guess it was today that Charity was being taken over to BryanLGH hospital for a CT scan of her abdomen, and the replacing of the PICC line. Sylvia was going to try to be with her on the ride over and during the proceedures. It may take a while before I have a phone call from Sylvia.
Several things we can keep praying about.
1. Sunday is Charity's 27th birthday.
2. Pray that she (or any of us) not lose sight of hope and the peace of God in the midst of devastatingly discouraging times.
3. Pray that all those involved with Charity's medical situation (from beginning to the present) not relent in trying to find solutions for her underlying problem (the lesion) and the chain of continual crisis.
(as reported by phone call from Sylvia to Phil)
I received a call from Sylvia on the CT scan of Charity's chest. They have found a blood clot in her lungs. Sylvia was quite distressed and wasn't sure what procedures they would be doing.
A follow up phone call from her communicated that they feel any danger to Charity's life is past. That she is not in immenent danger. They still haven't decided on exactly what things they will do. One of the most likely things would be for them to put in some kind of screen/filter to prevent any further clots reaching the heart.
This could be the cause, or one of the causes of her pain. She may continue to have pain for some time, that wasn't clear.
The CT scan results of her abdomen have not come in.
We are trying to see if we can get our other daughter, Heidi, to go to Lincoln today to be with Sylvia.
Jeremy is being contacted by the hospital staff. I'm not sure what decision in plans is being made there.
(from a phone call from Sylvia to Phil)
- They have decided not to move Charity to the BryanLGH hospital where they are equiped for critical care.
- The CT scan on her stomach wasn't real good. There seem to be some other issues happening there.
- They are watching her bladder, kidneys, lungs, heart for any possible further clotting.
- They have Charity on blood thinners, and that raises a bunch of other risks for hemoraghing.
- Charity is still very restless and not calming down even though they have her highly drugged. They are also not able to stretch her legs any longer for risk of blood clots.
Jeremy is in Lincoln again as well as Charity's sister Heidi.
(From phone call from Sylvia to Phil)
- Charity is resting, drugged a lot, but at least resting.
- Earlier in the evening she was told about the blood clot in her lungs and was a bit distressed. She's so drugged now she may not remember when she wakes up.
- Her heart rate is in a good range.
- Her oxygen is in a good range.
- Justin arrived in Lincoln with his friend from Italy Fabio. Jeremy and Charity had met Fabio a couple of times. So the three guys are enjoying an evening together. I think Jeremy appreciates their company.
- Sylvia is staying the night with Charity.
COMINGS AND GOINGS
- Justin and Fabio will return to Kansas City tomorrow, probably without Sylvia. The original plan was for Sylvia to return to KC and go back to Lincoln with me on Friday. The situation is just such that she may need to stay in Lincoln.
- I will leave for Lincoln, Friday at 4:30.
We are all grappling with how to manage the logistics in this difficult walk. I am amazed at how the Lord has sustained us, kept us caregivers healthy, helped us make mostly wise medical decisions, preserved our relationships, given us such caring support networks. These have all been such answers to prayers. I hope Charity has the opportunity some day (preferably on earth also) to appreciate the effort that has come together around her.
(information from phone call from Sylvia to Phil)
According to my count, today begins Charity's 100th day in the hospital. The first 26-30 days were the initial spiral of her health due to the enlargement of the brain stem lesion. When she reached a nearly total "locked-in-state" on May 14. The last 70 days the brain stem lesion has remained unchanged from what radiologists and neurologists are able to observe. She has off and on recovered some movements. The last 50 days have been a continuous series of medical crisis. Almost a vain attempt to keep Charity medically stable in order for her to regain strength and improve usage of those movements she has demostrated. While she has regained more sophisticated movements her strength and medical stability has been so compromised she has not been able to move forward significantly in recovery.
The fundamental question that occupies our thoughts is:
IF THE LESION IS TRULY NOT CHANGING, NOT INCREASING IN SIZE, HOW IN THE WORLD DO WE GET CHARITY MEDICALLY STABLE AND KEEP HER THERE SO SHE HAS A TRUE OPPORTUNITY AT REHAB THERAPY, A FAIR CHANCE TO IMPROVE HER LIFE?
We accept God's sovereignty in all of this. It is ultimately His decision to heal now on earth or in eternity. He has however also placed in the hands of man a lot of medical understanding. Is Charity getting the best possible? Rehab is an illusion if she cannot be kept medically stable.
MEDICAL UPDATE
- Charity seemed to rest well last night. Sylvia even got a good amount of sleep.
- She is pretty much like yesterday.
- There don't seem to be any significant medical decisions or plans for today.
- They are going to try some therapy today, but she is quite under the effect of drugs so her participation in it could be very limited.
Sylvia herself was not feeling well this morning. Pray that she can get some good rest today.
(from phone call from Justin to Phil)
Justin stayed overnight in Lincoln and is on his way back to Kansas City as I write. He needs to urgently get in flying time before school starts later this month.
It's been about 10 days since Justin last was with Charity. According to him Charity's strength is better than it was 10 days ago. Her color is good, and she seemed clear in her communications.
He said today Charity seems to be dealing better with pain, even refusing pain medication and just taking tylenol. The source of her pain today seems to be localized in the lung-stomach area.
Charity did therapy today and Justin was able to see her balanced in a sitting position and Jeremy even gave her a hug.
It seems the imminent danger for a blood clot may be mostly passed.
This does mean Charity is on blood thinners and more susceptible to bleeding (which put her in ICU once already).
----
Pray that she be monitored very carefully. Pray that we can strengthen our "teamwork" with the hospital staff and physicians. We do not want to communicate distrust to the hospital staff. There are some excellent nurses, technicians. I think we have been very pleased with all the "charge nurses". We do not want our tireless quest, to see that Charity gets the best care possible, offend or be a nuisance to anyone at Madonna. We do want to be listened to fairly and to have the freedom to ask questions and be informed. Our 100 day crash course in medicine has made us well informed but risky at the same time. Pray for God's wisdom and guidance that we use the knowledge we have acquired wisely and the humility to listen and understand Charity's attending medical teams.
I am asking for help for next week.
I am going to be alone every day next week all night and all day unless I have people who are willing to come and spend time with Charity during the days, and nights if at all possible.
Care Instructions,
1. WE PREFER PEOPLE THAT CHARITY KNOWS. Because, when help arrives, I am going to leave, and either spend time with my daughters or work on the upcoming year.
2. As far is what to do in the room with Charity, if she is awake, she enjoys watching television, beign read to, and just having people talk about their lives as if everything were completely normal. Reading the Bible outloud is most welcome and listening to worship music on CD's or books on CD. Most of the time these days, she is sleeping for alot of the time, but it is nice when she wakes up to see a familiar face smiliing at her. She also needs people to be aware of her medical condition and push the call button for her when and if she needs to be repositioned or medicated for pain.
3. If you are willing and available please contact me on my cell phone at (308) 991-1853 or Sylvia's (816) 812-0530.
4. When you arrive, please be aware that this room has become an extension of our souls. Be aware that you are walking in to our pain. We invite you here because we need you as our bothers and sisters in Christ. Please understand that having people walk into that sacred place in our souls is not easy for us. Nothing about this is easy, and we are also aware that this will not be easy for you. We just want you to be prepared for the full gamet of emotions when you come so you are not caught off guard.
5. Your smiles, comfort and joy are welcome here. They are NEEDED. We need people to come and lighten the load for us in every way. Don't be afraid to express joy about what God is doing in your lives. We love to hear it. It helps us see life outside these four walls. It benefits Charity greatly.
6. Be Yourself. Just be normal. There is no pressure on you to pretend. We won't. So don't pretend you are happy if you are sad. Again, there is nothing about this that is easy.
We are looking for help from Monday to Friday afternoon.
Thank you so much for even considering doing this.
Update on Charity.
Charity is doing pretty well actually. She made some gains AGAIN in therapy today which was encouraging to see. Her heart rate is good and so are her oxygen saturations.
Praise God.
Jeremy
Charity is about to do some rehab. I was a bit concerned this morning given that she already has a blood clot in her lungs that her legs were hurting. Her legs are not drastically different in terms of temperature, and she has a pulse in both feet which would suggest that no clot exists in her legs, but I am asking that we would all pray specifically that NO MORE CLOTS would form, and if they do that they would not be thrown to her lungs before preventative measures can be taken.
Lord Jesus, our suffering doesn't excuse us from obedience. You have called Charity and I to make disciples. I ask that you would give us the grace we need to be intentional about Your kingdom even as we follow You through what seems like a valley with no end in sight. I need Your wisdom God about when to be where and with who. Let me not waste a second of the time You have given me. I don't even know what to ask about Charity anymore. You know my heart. I love You, and i trust You.
In Jesus Name
Amen
(information from phone call from Sylvia to Phil)
Charity was doing physical therapy so Sylvia got a short break to give me a call.
- Charity's hemoglobin was at 8.9 so they are going to give her some blood as a precaution.
- Charity is quite alert but does a lot of crying still
- Her blood has been thinned and this raises the risk for hemorrhaging.
- Charity is also in her menstrual cycle so this raises her risk considerably for hemorrhaging.
- Sylvia says her color though is quite good
As you pray for Charity, please remember the "caregivers" around her. Today it is Jeremy and Sylvia. It is an emotional, spiritual and physical drain on those around her. We don't want to run out of the emotional, spiritual and physical strength ourselves as we seek to help Charity carry on her own determination to fight on as long as God grants her the opportunity of life.
I personally am convinced that Charity has some very, very good possibilities to truly enjoy a great quality of life if the lesion remains unchanged, we can win the medical stability battle, and allow her to participate fully in rehab.
-Phil
Today, Charity continues to show clarity of mind and soundness of mind. As you heard from Phil already, there are some medical concerns that have arisen that are being addressed in a precautionary manner. I am so thankful for that. Our charge nurse is really a quality person who is monitoring Charity in a really wonderful way. She keeps us informed and shows great concern for Charity and us whenever she tells us anything about her condition.
Today during speech therapy, Charity spelled out a request. That request spelled out "kilme."
At first that seems like a desperate plea, but not if you take the time to sit and ask my wife why she said what she said.
I asked her if she was more afraid of living like this than she was of dying. She nodded her head , "yes."
I asked her if that was because she knew that there was something much better waiting for her. She nodded her head, "yes."
I asked her if it was because it would be better to be with Jesus. She nodded "yes."
My next reply to her was, "heaven must be the most wonderful place because none of this is there." She began crying as I embraced her and nodded once again, "yes."
I then asked her if she was going to hold on to Jesus through this. Once again, and with an unsettling calm, she nodded, "yes."
Jesus, You and You alone have kept my wife in her faith. That is more valuable to me than her getting better, so I praise You, my Lord and my God for what you have done in her heart and what you are doing.
I sensed Your smile over her as she confessed her faith in You, and her love for You which today has surpassed her love for me and for our daughters. I praise You Jesus. Be glorified in my wife's life and testimony. Thank you for encouraging me today by my wife's faith.
In Jesus' Name, Amen.
Jeremy
(Information from phone call from Sylvia to Phil)
They started Charity on the blood transfusion last night. It was scheduled to end about 11:00 pm so Sylvia and Jeremy agreed to have Jeremy head back to Holdrege.
Somewhere during the transfusion Charity started puffing up, her head and right arm especially getting real swollen. They eventually called the Doctor and suspended the transfusion. Swelling has gone down some and they are going to start up the transfusion again this morning.
Charity's vitals have been good, Oxygen is around 96-98, urine is clearer, and bedsore wounds are healing.
Charity's movement have been inhibited, sometimes very little, but PT and OT seem to always succeed in getting her to move..
She seems to still complain about pain, chest pain, but that shouldn't be coming from the lung blood clot. It was such a small clot and the doctor thinks that isn't causing pain now.
It was another rough night for Sylvia, Judy H. is with Charity now while Sylvia tries to get some sleep this morning.
I will be on my way to Lincoln this afternoon.
I made it to Lincoln by 7:45 tonight and was so glad to be by the side of my daughter again. She wasn't crying and seemed quite peaceful. Her color looked good, and skin texture seemed good. Her vital signs are very good. Oxygen around 99 and HR around 70-80. She is not as responsive as last time I was here but my guess its the celexa drugs that keep her emotions in check. She doesn't seem to be in any great amounts of pain.
Sylvia though is a battle worn mother. I'm so glad I can take the evenings and hang out with Charity while Sylvia catches up on sleep, but most of all to have an emotional break.
Right now I plugged in the iPod for Charity and have it playing the Easter story narration of the gospels. There are a couple of free downloads at iTunes of the Gospel of John and then the Easter story. The narration is excellent with some sound effects. They make great bedtime listening, or while driving etc.
I thank God for another day of life for Charity. Sometimes the battle has been so long and so anguishing a persons despairs whether it is worth fighting on. Each time I see Charity, even in her pitiful state, I am glad for life. I'm glad for her life, not for the suffering she has gone through but for the privilege to be alive. We have no idea if God will call her home soon or after many years. It doesn't matter because until He makes that decision we will carry on the fight for Charity's health and life. When she doesn't feel like fighting on, we'll help carry the fight for her.
I continue to research and look for answers to the two basic questions about Charity's health. 1. To understand the diagnosis and prognosis of the brain stem lesion. 2. If it does remain unchanged what are the keys to her getting healthy and staying healthy. I welcome articles and information on these topics. You can email me directly at phil1972@mac.com
Lord, grant us the strength, wisdom and grace to carry on this fight in a way that will honor your name and according to your will.
-Phil
From the time I arrived yesterday evening Charity was not able to nod her head. That continued all night. It was rather frustrating because there was no way to consistently get "yes" or "no" confirmations from her. Nodding didn't work, thumb wasn't moving, even eye gaze was not consistent.
However Charity was calm and went to sleep comfortably a bit after 10pm. I don't know how many hours she had, but it couldn't have been that many.
Early this morning, around 6:00 am she started having upper body spasms. Ironically at the same time her head nodding and thumb movements became very consistent.
We've given her extra muscle relaxants as well as some muscle relaxant cream. Doesn't seem to be doing a whole lot.
So that's a curious thing how these spasms come and go, and how her movements come and go.
Her Heart Rate has risen slightly with the spasms to around 100 (during the night it stayed around 60-70). That's much different though than last week-end when she was running 150-170.
One puzzling thing this morning is her face is a flushed red look. One of the attentive medical helpers noted that and took her temperature. It's normal.
Doctor rounds (a substitute doctor) didn't reveal any new things.
-Phil
(Sylvia gave permission to put this online. I've typed it as accurately as possible. -Phil )
I'm sitting beside the bed where Charity lies. She is particularly unresponsive. Her eyes are not alert or comprehending today.
It may be due to different things or combinations of things; Lack of sleep, medications (although she hasn't had strong pain medication for quite some time), steroid reduction & as always THE LESION.
She has seemed more resigned - not giving up, but resigned - since her talk with Jeremy about wanting to go "home." I miss talking to her so much, I want to know what she thinks & feels.
I have thought over & over that I have reached the deepest depths of personal pain, but I seem to manage to dig still deeper & be even more exhausted. I never imagine (and Charity & I have often competed in who has the greatest imagination) that a life could exist with so many "worst days of my life" & still be counting.
I will look back someday & see the Lord's sustaining hand. Right now I am trusting though I feel He is silent. Job says "though He slay me yet will I trust." We are being slain daily, hourly. Thank you for praying for us. May we continue to trust though His hand be heavy.
- Sylvia
Tomorrow is Charity's birthday. For some reason, that God only knows, week-ends, and precisely the week-ends for Jeremy's birthday, Their anniversary, and this week-end "something" wants to stand in the way.
This afternoon Charity is having some strong muscle spasm spells. They put her whole body into tension and cause her heart rate to spike up in the 150 range. That together with less than normal sleep last night puts her in that unresponsive state.
We would so like for her to enjoy even a small bit of celebration tomorrow for her birthday. We'd love for some of her friends to stop by and see her. This situation has a potential to sidetrack plans for tomorrow. Pray with us that God would by His grace, grant relaxation of those muscles, and rest to her body.
-Phil
Charity hasn't been very responsive during much of the day and this evening. We've been this way before and don't know if that's something new or more of the same. Her spasms have died down this evening. They also gave her a shower (I think her first one since Mayo). She's sleeping and snoring lightly a few steps away. I'm staying with her tonight.
Tomorrow Charity celebrates 27 years, at least we hope she is responsive enough to appreciate her family and friends around her.
Sylvia and I will make another try at getting to church tomorrow. We'll try a relay, she'll go first service and I'll go the second.
Tomorrow afternoon we hope to get Charity in the wheelchair and have her at the apartment for a Birthday celebration.
Today Charity turned 27. It's also her 104th day in the hospital.
Thanks and praise to the Lord for graciously giving Charity most of the last 12 hours in sleep. She woke at about 6:00 am and was crying, (almost saying an owe sound). It was her legs cramping. I stretched them and in 10 minutes she was relaxed and back asleep.
She was more alert and responsive. She indicated that the cramping was only in the legs. Her upper body so far didn't seem to be having spasms.
We pray and hope that the sleep last night will translate into a good attentive day for Charity, that she can be with and enjoy her husband, girls, family and friends on her birthday. We pray and hope also that thoughts of what has happened to her in her health don't overwhelm her today.
If all proceeds reasonably well, we hope to have Charity in the wheelchair this afternoon and over to the apartment.
Photos of Charity's first birthdays are in the Photo Albums section.
-Phil
Charity's strength seems to be holding out so far. She was in the wheelchair a bit this morning and they are now putting her back into bed to rest in anticipation of her outing at 3:00 to the apartment.
I am so thankful the Lord has granted her this little bit of a peaceful day in the midst of so many ups and downs. Thank you Lord for answering the prayers of so many in giving this good beginning for Charity's birthday.
She has continued being able to nod and shake her head but I can see her energy level being used as the day wears on.
This morning Charity got a surprise gift for her birthday. Last night Justin and his friend Fabio decided at the last minute to drive up to Lincoln. So this morning Justin treated Charity with his presence.
We all finally succeeded in going to church. This is the first time Sylvia and I have been able to make it to church since mid June! Things held in place and no crisis (large or small) came up to interfere.
-Phil
Charity's birthday has been a real answer to the prayers of everyone. God has graciously given her a day free of any dramatic events. She slept well last night, had enough energy to make it to the apartment and stayed there for 2 3/4 hours. She didn't have any visitors but it was nice to be together as a family in the home setting.
Charity's responses are very slow and limited but she was able to move enough to make herself understood for most of the day.
This day brought us into contact with someone I had roomed with at Moody Graduate school 20 years ago. He and his wife have just gone through losing a 28 year old daughter. It was by divine appointment Sylvia met him in church this morning.
God has been good. It's been a good day in the midst of this long dark walk.
Sylvia and I are back in KC for several days. That leaves Jeremy with his Mom and his two kids in Lincoln. There should be some individuals helping Jeremy with care for Charity. I think he still has some days he could still use some help. There is a journal entry from several days ago you can check with information to contact him.
Again, I praise the Lord Charity had a relatively problem free birthday. Thank you to those of you praying for her.
We continue to covet your prayers as an extended family. The wear and tear of this long difficult walk is taking a toll on each of us. We want to persevere in a way that honors Christ, in a way that will be to Charity's best interest in health and spiritual well being.
- Phil
(some information from a phone call to Jeremy and another to a family friend Joyce N.)
Sylvia was with Charity last night and even though I made it to her room by 7:00am I missed the doctor's visit. Sylvia asked all the right questions. Three important things.
1. They are working at getting her blood thinner to the correct level. It seems to be still a bit too thin. Sylvia said when they put the turnoquit on blood squirted out of previous needle punctures.
2. Consultation with neurologists should take place to see if enough time has elapsed to repeat Charity's MRI
3. They will continue the current Celexa dosage but we're asking to see if it would be wise at some point to adjust dosage so Charity isn't so minimally responsive.
Jeremy said the day overall was much like yesterday. Charity was more responsive in the morning and with the passing of the day was only minimally responsive. She has not had a lot of spasms, which is a relief. Jeremy will be staying with Charity overnight. Tomorrow a family friend, Judy B. will be helping during the day.
Today from 10:35 until 4:00pm a family friend Joyce N. stayed with Charity. Joyce said Charity was much better today than the last time she had seen her last Wednesday. Charity participated well in PT and OT. Speech therapy instead was more difficult. Charity hadn't remebered using the technology equipment from last week. Charity did cry today a few times, once right after Sofia left her room.
Just before leaving Lincoln, Sylvia and I had coffee with my friend/acquaintance from Moody Graduate School. Tom R. Tom and his family have gone through a very difficult trial of their own with a daughter almost the same age as Charity. Their daughter went to be with the Lord the day Charity was checking into Mayo Clinic. Today would have been their daughter's birthday. It wasn't by accident that our families have come into contact. There is a whole story behind it all and developing and someday we may share more. I know the grief is all so deep yet in this family and I ask those of you, friends of Charity to pray for Tom & Linda, their son-in-law, and three grandkids who have lost their mother.
When does the fatigue of a long drawn out fight for health and life become just a weary battle? Won't people just get tired of hearing the same ol' story of Charity's struggle and just want to move on to other things in life?
As Charity's Daddy I am reminded again this week, "never give up". Each day of life is a special gift for Charity and for us. Each day of life is a renewed opportunity to PRAY, WORK, RESEARCH for solutions to Charity's
-fundamental health issue ->the brain stem lesion;
-ongoing secondary issues ->her current medical and physical health
-future ->recovering as much of her neuro-motor skills as possible through therapy, rehab etc.
TODAY'S SITUATION
Today in a phone call from Jeremy I can report this.
- Charity slept well most of the night
- Her hemoglobin in the 12's (very good)
- In the morning she is following what's going on.
- She shows some responsiveness but this seems to be still a lot less than it has been in the past.
- She is doing quite a bit of crying. It seems to be motivated most by her sad thoughts about her children, Sofia and Isabella. (not being able to be their mother).
- Consulting will be done to do another MRI at some time in the near future to evaluate the situation with the brain stem lesion.
-Phil
Well today has started out with nothing really exciting going on which usually is a good thing. However, there was something that happened today that was very exciting.
Charity stood up with help, and without a machine. Once they worked on getting her to brace herself, she was able to do 75% of the work of standing on her own. THIS IS A HUGE THING. When she sat down, SHE ACTUALLY SMILED. She knew she had just accomplished something really special.
Charity has been very emotional today. She is sad about not being able to hold Sofia and Isabella and to take care of them in all the ways a mother should be able to.
I personally am completely frustrated. I feel very UNABLE to do the things I MUST do, without neglecting something of equal or greater importance. I got to yell about everything with a friend and a mentor yesterday, which felt exquisite at times. Thank you to (you know who you are) for allowing me the freedom to be human. It meant the world to me. I felt completely understood. Thanks, and I love you brother.
I need prayer, because it is a matter of obedience that I attempt the impossible for this upcoming year. God, you are the God of the impossible. Once again, I simply say that i need You to shape us into the youth ministry that You would have us to be. Change my heart in the way that it needs to be changed. Change the hearts of those who will serve You in this youth ministry as they need to be changed. Bind us together at the heart. Change the hearts of the youth to see Your way, to see that they are called to live like You lived, in order that they might be like you. In order that they would be worthy, as You have made them worthy, of the title "Christian" (Christ-like one). All of this for Your glory Lord.
Through gnashing teeth and much frustration.
In Jesus name and for His glory.
Jeremy
Charity stood up today for 10 minutes, doing alot of the work. She then took a rest and stood for 7 more minutes.
She is down to 8mg a day for steroids and for the most part seems to be tolerating it. She seems to follow everything we say, she definitely follows commands specifically. She locks on with her gaze appropriately, but it is REALLY hard to get a clear "yes" or "no" from her for even the simplest of questions.
Charity didn't sleep well. She had a lot of severe muscle spasms and coupled with a HUGE thunderstorm that shook and lit up the room, it made for a long night for Charity and Jill, who stayed with her last night.
Just wanted you all to know the latest.
Jeremy
Ok. I need prayer and SO DOES CHARITY. I am quite certain that Charity no longer knows who she is. I am also quite certain that she no longer knows who I am or where she is.
I am not sure what to do, but I am just asking that all of you would pray that clarity would return to Charity's mind. Medically she is doing fine. BUT as you might imagine, this is scary.
Jeremy
We got a phone call from Jeremy just before midnight. They are taking Charity to the emergency room at BryanLGH East. The two neurological symptoms are
1. Her eyes are not dialating and responding the same. If you shine a light in one eye, both eyes should respond.
2. She is not able to move her eyes laterally, (left to right) she can only look up.
It wasn't clear if there were other things happening but it seems that Madonna Rehab felt these developments were beyond their capabilities.
Tim Kroeker, Amee's husband, is on his way to Lincoln to be with Jeremy. Sylvia and I are praying and trying to decide what our best action should be now.
ADDITION: I called the nurses station at Madonna and it seemed that while there are some strange things happening, a big part of the decision to send Charity to Bryan was because tomorrow she was scheduled for a CT scan of her abdomen anyway. So her doctor thought it prudent to send her in advance.
Well it is 2:19am and I am wide awake with my love at Bryan East. Just got a report back from a Cat Scan that they did and there has been no more bleeding and no change in size. They are certain of it. That is SUCH A RELIEF.
They are still not sure why Charity's eyes are seemingly fixed in an "Up and to the left" gaze. They said that she may be having siezures.
Charity didn't sleep well last night, and she hasn't slept at all today and won't for the rest of the night. She shows no signs of sleepiness. Her eyes are wide open.
I on the other hand am exhausted and have another long day ahead of me tomorrow. I do have some help coming though. Hopefully I can get some sleep.
Man, alot happens when you are sleeping eh?
Love all of you very much. Thank you for your continued prayer and intercession on our behalf.
I will need your prayer tomorrow.
Jeremy
Well, it is 5:16am now. I just finished discussing Charity's medical history. He was a very capable doctor in my opinion and I trust him. Unfortunately, he will not be following Charity's progress.
He seemed to think that Charity most likely had episodes tonight and over the past two weeks consistent with seizures. Her gradual unresponsivness, foam at the mouth which we thought was just excess secretions she was pushing out, and very dilated pupils would suggest siezures.
They are going to do EEG tests to try and determine this definitively. They will not put her on anti-siezure medications because they react strongly with the kinds of medications Charity is already on.
So, one more thing to put on the list for Charity to have to deal with.
WOW.
Jeremy
Well it is about noon. I have one hour of sleep under my belt, and not much has changed. Charity is completely unresponsive. Seizures are still the main focus of attention. In a little while they will be coming to take another MRI to be certain of the stability of the lesion in Charity's brain stem.
I need to be home this weekend to do some very IMPORTANT things for the upcoming year. I am asking all of you to pray that God would allow me to come home and do what needs to be done this weekend.
I was reminded of Jesus again today. "He came unto His own and His own received Him not". Jesus understands how it feels to not be known by the ones you love the most. That has comforted me today.
It doesn't matter who Charity knows. It matters that she is known by the Good Shepherd.
Just keep praying with us.
Jeremy
Well, Charity just got back from her MRI. We are waiting with much anticipation to hear the results. I feel as though the results of this MRI are going to prove significant in terms of prognosis.
Charity remains incredibly unresponsive, but it did seem to me on the way up here that she was finding comfort looking at my face. She still doesn't know who I am in my opinion. I haven't seen anything that would lead me to believe that Charity is in her right mind.
She is now receiving contrast to do what she was supposed to do today, a CT scan of her abdomen and pelvis. They are also starting ANTI SEIZURE MEDICINE, which I guess is a pretty strong statement by the doctor that she is having seizures. Haven't heard the results yet from the EEG.
I am doing fine in spite of less than 2 hours sleep total. I am really missing Sofia and Isabella right now and to be honest, I really miss Charity. It has been so long since I have had any meaningful interaction with her. I am a single parent, and separated from my companion in many ways.
Jesus, I now glimpse, if only ever a glimpse, what you must have felt at the cross as the One with whom You were One, turned His back and there was separation. This just really hurts. Help me Jesus.
I love all of you so much.
Jeremy
Charity is now following me around the room with her eyes, which I believe shows that the medications for siezures that she has received now for a day are working.
She is having (I believe) muscle spasms pretty badly today. I can't tell you because I still can't get her to respond to my questions. That is still an area of concern. I asked her if she knew who I was today and she nodded "no". But then I asked her if she was married to me and she nodded, "yes." I still think she is totally confused. She did seem to know where she was and why she was here in any case.
I got to sleep around 10pm last night and didn't wake up until 9:30am.
I feel somewhat rested, but a little anxious for the results that will most likely be shared today. I am still afraid that there may be a change on the MRI that they coudn't see on the cat scan that showed no change.
I think Charity is falling asleep as I write this. She just recieved some valuum (does anyone really know how to spell that word anyway?).
Charity slept some last night, alot this morning and is sleeping now. Hopefully it will be meaningful sleep and not the kind you get and when you wake up you are exhausted because you didn't get the uninterrupted kind of sleep that you needed.
If everything goes as it has been, I will most likely and Lord willing coming back to Holdrege this weekend for some very necessary meetings with what I hope turns out to be my leadership team this year.
Please pray for those meetings ot be care free and very INTENTIONAL. Pray for me to be able to express the vision God is leading us to concisely and accurately. Pray that God would be pleased to do what I think He is beginning to do at our church.
Not sure what else to say really so I am going to get back to work while Charity is sleeping.
Jeremy
Charity is now following me around the room with her eyes, which I believe shows that the medications for siezures that she has received now for a day are working.
She is having (I believe) muscle spasms pretty badly today. I can't tell you because I still can't get her to respond to my questions. That is still an area of concern. I asked her if she knew who I was today and she nodded "no". But then I asked her if she was married to me and she nodded, "yes." I still think she is totally confused. She did seem to know where she was and why she was here in any case.
I got to sleep around 10pm last night and didn't wake up until 9:30am.
I feel somewhat rested, but a little anxious for the results that will most likely be shared today. I am still afraid that there may be a change on the MRI that they coudn't see on the cat scan that showed no change.
I think Charity is falling asleep as I write this. She just recieved some valuum (does anyone really know how to spell that word anyway?).
Charity slept some last night, alot this morning and is sleeping now. Hopefully it will be meaningful sleep and not the kind you get and when you wake up you are exhausted because you didn't get the uninterrupted kind of sleep that you needed.
If everything goes as it has been, I will most likely and Lord willing coming back to Holdrege this weekend for some very necessary meetings with what I hope turns out to be my leadership team this year.
Please pray for those meetings ot be care free and very INTENTIONAL. Pray for me to be able to express the vision God is leading us to concisely and accurately. Pray that God would be pleased to do what I think He is beginning to do at our church.
Not sure what else to say really so I am going to get back to work while Charity is sleeping.
Jeremy
Charity is now following me around the room with her eyes, which I believe shows that the medications for siezures that she has received now for a day are working.
She is having (I believe) muscle spasms pretty badly today. I can't tell you because I still can't get her to respond to my questions. That is still an area of concern. I asked her if she knew who I was today and she nodded "no". But then I asked her if she was married to me and she nodded, "yes." I still think she is totally confused. She did seem to know where she was and why she was here in any case.
I got to sleep around 10pm last night and didn't wake up until 9:30am.
I feel somewhat rested, but a little anxious for the results that will most likely be shared today. I am still afraid that there may be a change on the MRI that they coudn't see on the cat scan that showed no change.
I think Charity is falling asleep as I write this. She just recieved some valuum (does anyone really know how to spell that word anyway?).
Charity slept some last night, alot this morning and is sleeping now. Hopefully it will be meaningful sleep and not the kind you get and when you wake up you are exhausted because you didn't get the uninterrupted kind of sleep that you needed.
If everything goes as it has been, I will most likely and Lord willing coming back to Holdrege this weekend for some very necessary meetings with what I hope turns out to be my leadership team this year.
Please pray for those meetings ot be care free and very INTENTIONAL. Pray for me to be able to express the vision God is leading us to concisely and accurately. Pray that God would be pleased to do what I think He is beginning to do at our church.
Not sure what else to say really so I am going to get back to work while Charity is sleeping.
Jeremy
Charity's latest MRI showed conclusively and definitively that there has been NO CHANGE in Charity's lesion. That means that these seizures are NOT the result of any kind of new growth or change.
Praise God for that!!!
NO CHANGE. NO CHANGE. NO CHANGE.
Jeremy
Sylvia and I arrived in Lincoln about 6:30 pm. Heidi and her husband Steve with our granddaughter Kaitlyn arrived earlier so Jeremy with Sofia and Isabella left for Holdrege about 6:00. Let's all pray for them to have a good next few days. Jeremy's mom June will leave for a couple weeks of needed break, rest and reunion with her husband in North Carolina.
While driving up from Kansas City I received a phone call from Charity's last attending physician at Mayo Clinic. They reviewed the last MRI's we sent up to them, (not yesterday's but from a couple weeks ago). They see as well that the lesion has NOT increased in size. There is some color change but that's due to the change from when it was hemorrhaging to now when it is not bleeding and the blood is being absorbed.
He inquired how she was doing, and when I related the possible seizures he seemed a bit puzzled and explained that seizures are not caused in the brain stem area. That she may respond to the medication but before she uses it long term there should be other positive seizure indications.
I also hope our talk will clarify how we can get the communication can be expedited between Mayo and the neurologists here in Lincoln.
Charity should be moved back to Madonna tomorrow.
It is nice to be at Charity's bedside again. I will stay with her tonight. Sylvia will be alone with Charity most of the next two weeks.
-Phil
The room is quiet and Charity is sleeping as soft Christian music plays in the background. She opened her eyes a few times this evening. I went to get her eye glasses from Madonna so she could see better when she does open her eyes.
I have left a note with the nurses that I want to talk with the neurologists when they make their rounds in the morning. I have a bunch of questions. Pray that I am able to ask them and that I can have a good informative visit with him. I would like to know...
1. If the lesion is not increasing in size, what is happening that Charity is losing her presence of mind? Can other things be happening neurologically?
2. If the brain stem is not where seizures come from, does she really have a seizure or something else? What?
3. Do all of these events get us any closer to a diagnosis of the cause of the lesion? (80 days unchanged, physical therapy going good, mentally deteriorating, seizure-like symptoms)
4. What is reversible or not reversible in the human understanding of things?
Thank you to all of you, far and wide, for continuing to hold Charity and us before the throne as this deep valley walk becomes deeper and more ominous.
It would be very difficult to come to this room, or to leave this room without firmly accepting the truth that God is sovereign and thoroughly good in all HE does.
-Phil
Charity slept reasonably well last night. She had one time when she was awake from about 3:30-4:30am. During that time I pulled up her web site and started reading notes from people, positioning the computer so she could see it and follow reading it. (I’m trying to understand if she is reading or not). I would ask her then if she remembered the various names of people. Sometimes she would respond. When I read Myrna’s note, I asked if she remembered her and she nodded yes. I asked her about others as well and people she hasn’t known from before, she nodded no. She was pretty much awake at 6:40 so I set up her birthday gift and started showing her slides of our family.
(For her birthday we bought her a portable DVD player with 7” screen that also has a dock for an iPod. So when I come with the iPod I can show pictures or videos of things that are familiar to her from the past, or we can just play music in her room.) I started a the set of her wedding, then stopped wondering if she would want to see that, and she nodded she did.
I also continued my reading the gospel of John to Charity in Italian. I have no way of determining how she's following in that.
So while for the most part Charity is not responding as if she is fully mentally there, she does respond definitely and correctly at times. As you can imagine this is an emotionally difficult time for all of us as we wait, and ponder what Charity’s mental situation is and what it will be into the future. As of yet the doctors haven’t made their rounds but I’ll be waiting.
-Phil
Charity, I love you. I miss you. I just want you to know that you are in my thoughts and prayers always. There is never a moment that goes by when I don't love you completely and truly. You are the only one I want.
Our home is not complete without you. I see you everywhere. I smell the scent of your perfume and it makes me weak. I love you. I spray your perfume on Sofia so when I hug her, I feel in some small way like I am hugging you.
Faithfully,
Jeremy
Charity got back to Madonna about 2pm today. She's in the same room as before, 226. Sylvia and I took turns with lunch, I got in a short nap, and at this moment Sylvia is setting things up in Charity's room. They had emptied out her room.
Charity has been doing many more nods and head shakes to communicate her intentions and feelings. She's actually doing quite good at nodding. She is also having some upper body muscle spasms.
Sometime this afternoon we expect the neurologist to stop by. I continue to pursue every avenue possible to improve Charity's enjoyment of life. As long as the Lord leaves the door open to improvement, or adaption I feel committed to carrying on the search.
-Phil
Charity's recent hospitalization at BryanLGH pointed to suspect of seizures. She has started treatment for the seizures and they are continuing that here at Madonna. We understand from everyone knowledgeable about seizures that it takes several days for the anti-seizure medications to reach an effective level. Charity could experience seizures until that level is reached.
This afternoon Sylvia and I experienced an episode with Charity. It was a draining experience, not just for Charity but for us as well. Charity is now fast asleep, totally tired out from the episode.
Tonight they will be checking Charity frequently. I will be staying with her. We anticipate that in a few days the medication will take effect.
So Charity's long walk in a dark valley takes on a new dimension. We rest ourselves in the Lord's sovereign hands. As long as He gives her the breath of life we will apply ourselves to find out how to make her life the very best possible.
Thanks to so many of you for your continued supportiveness, prayers, and notes you send to Charity. I enjoy coming to her bedside and reading those notes to her.
-Phil
Charity slept quite peacefully most of the night. After her seizure episode early last evening she fell asleep and slept until about 10:30, then she woke with upper body muscle spasms. It seemed like she was going to have another seizure episode but it turned out to be just a series of muscles spasms in her upper body. They gave her some added muscle relaxants and pain medication. With that she settled down and slept until 6 am.
During doctor rounds we learned that the antibiotic they are using for her latest UTI infection could interact with some of the medications. They are going to hold the anti-depressant until they have a specific culture for the UTI and then adjust the medications, (always a juggling game).
This morning Charity and I have been looking at photos together. Maybe Sylvia and I will be able to get to church again today. We'll see.
Sylvia will be alone with Charity here in Lincoln this week. I think she has lined up some people to help her out and give her some breaks. If there are others who are friends of Charity and think you might be in the Lincoln area let Sylvia know and she could suggest good times to stop by and give a hand. Call her at 816-812-0530
-Phil
I am so disappointed that I will be leaving Lincoln tomorrow without any conference with a neurologist. You would think after 110 days of hospitals that I would know how to work with the system better.
At BryanLGH hospital the "Hospitalist" said the neurologists would be coming by yet Saturday morning before Charity was discharged. I left a message with the nurses station to be sure and call my cell if the neurologist happened to come by when I was out of Charity's room. Discharge time was nearing and the nurses were uncertain if the neurologist would make it before she left. They contacted the neurologist and the message was relayed to us that since it was so close to discharge he would just see Charity over at Madonna. Charity moved to Madonna and I arranged my schedule so I would be sure and be in her room when he came by. Evening came and no neurologist. I did a few errands and then spent the night in Charity's room. At morning doctor rounds the charge nurse said she would contact the neurologist to find out when he would be stopping. Later she relayed to me that he had never planned to stop at Madonna. That we must have misunderstood. She had jotted down my questions and had gotten answers from him over the phone. So my week-end conference with a neurologist ended up being a message relay by phone through a third party and I'm sure Jeremy & Charity's insurance company got billed for some kind of neurological services, to me "phantom services"! I am so disappointed, so frustrated.
-Phil
Yesterday, all said and done was a rather peaceful day for Charity. There were a few spells with spasms, but no evident seizures. Her responsiveness in answering yes and no to questions was the best its been in days.
She watched PRIDE AND PREJUDICE the 2005 version. She watched the whole video and was following it very well. At one point there was a humorous incident and I laughed, and Charity also gave a small snicker. We played it on the portable DVD player she got for her birthday. We can place the screen right close in her field of vision. Even though its only 7" she seems to be able to follow it well.
I think she slept OK last night. I didn't get a full report from Sylvia who hurried off to the apartment to get some sleep before I leave this morning. Charity's movements weren't quite as strong as yesterday during the day, but that may improve today as the day wears on.
Sylvia will be alone with Charity this week. I think she has someone helping on Friday. Other than that she'll be pretty much alone. She would welcome help to give her some breaks during the day. Call me at 816.332.0530 if you feel you could help and I'll help Sylvia schedule people.
The doctor rounds this morning went OK. Dr. Reida and the nursing staff are really giving their best efforts to keep Charity balanced and stable so she can apply herself to rehab.
We would just pray that Charity could connect enough of these good days in a row so she can give herself to rehab.
-Phil
I hope you understand why I have to be here away from you. You know my first love is Jesus and that I must follow Him and pursue obedience even in this. I know that it is your desire that I do so because your love for me and the girls is a genuine love. You also know that I love you more than anything in the entire physical universe and that if it were at all possible, I would freely trade places with you. You know that I love our daughters and must do what is best for them at any cost to us.
You are not alone. I am WITH you in this. I will walk you through this my love. Though I am not physically with you right now, I will NEVER abandon you. You are more precious to me than my life. I would freely give it, if you would be better and able to do all you once could today.
I miss you. It us just torture to be away from you. I wrap up the covers of our bed in my arms and I pour out my heart to God for you every day. Please know that you are so incredibly loved. Remember also that the incredible love that I have for you pales in comparison to the perfect love God demonstrates for you in His Son. He is our hope. Our only Hope. If that is all we ever have again, He has been good to us. More than good. Unspeakably good. He hasn't changed, and neither has anything of eternal significance. Hold fast to Him, my love. You belong to Him. You are bought with a price, not with perishable things like silver or gold, but with the precious blood of Christ. You are a new creature. Completely new. Completely beautiful. Completely whole. Patiently wait for the revelation of Jesus Christ, when all will be made right that was wrong, and as I said before, Jesus Himself will wipe away every tear from your eyes. Remember that all your pain and suffering has not been wasted. It is the demonstration of the glory of God. You are bearing much fruit.
I am so proud of you. I am so honored to be your husband. I can't wait to see you. SOON, my dear. I will be with you soon.
Your faithful husband.
Jeremy
(Information from phone call from Sylvia to Phil)
I am back in Kansas City while Sylvia is in Lincoln with Charity and Jeremy is on the planned visit to Holdrege.
-Last night Charity slept somewhat Ok until about 5:00AM Sylvia stayed with her during the night.
- They have noticed a possible leakage of her stools and are needing to ascertain what it is. Special equipment is probably arriving tomorrow to help them in that diagnosis.
- Sylvia says that Charity is less responsive today than over the week-end, she is more distant and not moving any muscles, more like she was on Friday.
- Sylvia has had the help from some ladies who are lending her a hand. Tomorrow, Charity's sister, Amee will be in Lincoln.
-Phil
(Information from phone call from Sylvia to Phil. I hope I get this information correctly)
Late this afternoon Charity's doctor checked on her again. The GI (Gastro Intestine) doctor will check her tomorrow at Madonna. A routine procedure (similar but not as delicate as a colonoscopy) will help determine if she needs some type of surgical intervention. They seem quite hopeful that will not be necessary.
This new development may possibly delay her being moved to the next level of care. We hope the insurance will continue to certify her ongoing care.
I received a call from the neurologists in Lincoln and got word that they will be stopping by Madonna to check on Charity and then give me a call with their evaluation.
On a family note, Justin passed his FAA oral and flight exam today! He now has his private pilots license. His summer flight school at LeTourneau was interrupted at the beginning of Charity's hospitalization, the day before she had the brain biopsy in Omaha. He did get approval to finish it outside the college program, and that is now complete today.
-Phil
(Information from phone call from Sylvia to Phil)
[This journal serves as a medical chronology document for us so while we may not include some pesonal details we do refer back to it ourselves to help us understand Charity's situation. Today there are a lot of details I want to Include]
Charity's situation today
- She woke pretty clear. Sylvia noticed her pupils were normal size, her eyes were actually blue!
- Her responses were clearer but not always accurate
- Dr. R noticed she seemed a lot clearer than she had been last week.
- Sylvia notice Charity looking at the pictures of girls hanging on the wall. Sylvia asked if she missed them and Charity nodded and whimpered.
- (this last week-end I also noticed moments when Charity's eyes were dialated normally)
- Later in the morning Sylvia saw a change coming and Charity seemed more distant and her eye pupils were dialated very large again, so very little blue showed.
- Yesterday there was a time when Sylvia wasn't even sure if Charity knew who she was. Charity's eyes were large as if somewhat frightened, pupils were large, and whites of eyes showing a lot.
- Yesterday also Charity gave some good strong, sharp coughs. She was in the wheelchair at the time and to Syvlia is looked like she was choking, and turned somewhat red. [I noticed a few nice sharp strong coughs over last weekend as well.]
- Sylvia talked with someone from PT and they are saying Charity is doing quite well but their impression is that she is not giving everything she could. She may be depressed and feeling like its just not worth putting out the effort.
Medical Situation
- Charity will undergo a type of scope exame this morning, being done at Madonna but by some GI specialists. This will happen about 11:00am
- Pray that she doesn't perforate or that other complications happen. The steroids make her much more susceptible to ripping.
- Sometime after this exam they will probably put Charity on IV feeding for a week or more to allow her to heal. Again steroids slow the healing process. So during this time she will be off tube feeding.
Sylvia and Caregivers in Lincoln
- Today Sylvia has some people coming by from 11:00-1:00 and then others from 1:00-3:00. After that in the afternoon our other two daughters, Amee and Heidi will be in Lincoln.
- We are so glad that Jeremy has been able to keep his original plans to be in Holdrege.
Thanks to all you have helped, offered help, prayed and expressed concerns.
-Phil
(Information from phone call from Sylvia to Phil)
I just got off the phone with Sylvia. They have decided to not do the scope exam, (maybe the risks of perforation is a factor). They will instead do a CT scan with barium. She has to be on fasting for a while so that may not get done until this afternoon or tomorrow.
Sylvia's observations from PT and Speech Therapy this morning is that Charity is hardly moving at all, and in Speech Therapy she didn't seem to even know Sylvia. (medications given recently were Flexiril at about 8:30)
GOOD NEWS though comes from the wound doctor who says that Charity's bed sores are almost all healed. That she is doing really well in that healing. So her body CAN HEAL itself!
(information from phone call from Sylvia to Phil)
Tomorrow Charity will be moved back and forth between Madonna and BryanLGH East.
- At about 7:00am she will be taken to BryanLGH for examinations on the intestinal leakage.
- She will then return to Madonna for about 2 hours when they will give her the contrast for the CT scan.
- Later then she will be taken againto BryanLDH for the CT scan of her abdomen. Part of this exam will also be a follow up to the surgery done several weeks ago.
It's my understanding that Jeremy will be arriving in Lincoln this evening.
-Phil
Well, I got here and saw Charity, ran to embrace her and just fell apart. I missed her so much and I am so glad just to be in the same room as her.
She doesn't seem very aware of what is going on, and has only appropriately nodded once in response to anything I have said. She seems to be doing ok medically in any case, except for these new recent conditions that have developed.
Really, how many CT scans can a person have? It is so frustrating that even when something seems to be getting better, something else must take its place.
It was good to be back in Holdrege and see some of the kids that I believe will change the world in huge ways if they follow Jesus. I feel like we are getting somewhere and Lord willing we will be ready to go this fall, and definitely walking in the way Jesus taught us to. There will be some changes, but NOT AS A MATTER OF CONVENIENCE. The changes that will occur are a matter of OBEDIENCE.
That excites me. But I would be lying if I said that I am not really struggling with emotions and severe loneliness. Not the kind of loneliness that comes from being isolated from people. It is the kind of breath taking sadness that comes from being separated relationally from the person you love most in the world. There are times when I forget about our circumstances. I can laugh. But after the laughter subsides there is a sense of loss that settles in my soul.
I really need prayer for protection. The enemy is waiting at my door step every moment waiting to pounce on my weakness. There are many fiery darts aimed at my soul that are meant for my and our destruction. Please pray for me in this way if you would.
I need wisdom for parenting and disciplining the girls. Sofia in particular senses weakness and like every child does, exploits that weakness to try and get what she wants that may not be good for her. I don't want to cave to what I know is not in her best interest. I want to be firm about truth and lovinig discipline because I love her.
I also need wisdom with how to be with Charity and what to say. I need God's grace and His words to flow through me to her.
Well, I guess we have a busy day tomorrow. I am glad I get to give a couple days completely to Charity.
Jeremy
(information from phone call from Sylvia to Phil)
Tonight Sylvia reports that for most of the day Charity has been unable to close her eyes and unable to blink her eyes.
She sometimes can follow commands
They used some electrostimulation of some of her hand and arm muscles and they moved. However other than that movement she is not moving hardly anything. Charity has not even been moving her thumb.
Charity's HR has been hovering a lot around 125 and her OX level is slightly lower.
I had a phone call from a neurologist today and sometime in the future a visit will be made again to see Charity. Sylvia really would have appreciated a visit today from neurology.
Tonight Sylvia spends the night with Charity again. She has a head ache and I sense she is quite down in spirits. Pray for the Lord to minister His peace to her heart this evening. It doesn't promise to be a restful night.
-Phil
(Information from phone call from Sylvia to Phil)
Charity started her day 116 early, she slept Ok last night until about 4:30. From them on Sylvia was at her side, (more like at her feet), stretching her legs which seemed to be giving her pain today. She was doing some crying as she has muscle spasms and her HR was running a lot around 130. Charity is nodding her head.
They will possibly move Charity to the next level care, "acute rehab".
Sylvia's back was hurting from the endless muscle stretching, and I know she is weary, tired and worn out both physically and emotionally. I will be driving up to Lincoln this afternoon sometime.
YESTERDAY'S EXAM RESULTS
My understanding of the exam results from yesterday is that Charity has some issues yet with her gastro-intestine tract, but that the doctors felt it was better to leave it alone and see if it will heal on its own rather than risk provoking something else.
(Information from phone calls from Jeremy and Joyce N. to Phil)
While Sylvia was sleeping today, Jeremy and Joyce N were with Charity. They report the following
- Charity seems to be connecting a bit better with people around her.
- She is uses head shakes and nods to communicate. Most of her responses seem to be correct some of them inappropriate.
- She stood up again in the Physical Theraphy gym with the help of the therapists and equipment.
- Charity was making voice sounds on command
A neurologist stopped by to see Charity today, (not the one that called me yesterday, but one of the colleagues in that same office). Jeremy seemed encouraged by some of the evaluations. As time passes it seems less likely that Charity has a cancerous tumor. One suspect being looked at again is MS. It is still very difficult to determine with certainty. Also because of the extreme delicate location of the lesion it doesn't have to be cancer that causes great devastation.
Charity's quality of life will be greatly enhanced if:
1. There is no further enlargement of the lesion.
2. We can get ahead of the medical stability game so she has the physical and mental strength to do rehab.
3. She can apply herself mentally, volitionally to the rehabilitation program.
In a few moments I'll be on my way up North to be at the side of my daughter for the week-end.
-Phil
It's my privilege to give Sylvia a break and take my turn by Charity's side tonight. From a week ago I don't see a lot of difference, neither better nor worse. Charity is doing a lot more crying this evening. She got her evening medications about 30 min ago, when she was also having a good amount of upper body muscle spasm. She has quited down now and is sleeping. We hope this last at least as long as last night.
Before going to sleep the four of us (Charity, Jeremy, Sylvia, myself) read from Psalm 33. The last verse, "Let your lovingkindess O Lord, be upon us, according as we have hoped in you." Our only hope was, is and will be only in Him. It was 116 days ago that the four of us began this difficult journey. We had no idea we would be where we are now, 116 days later. God did, and He knows where we will be 116 days from now.
-Phil
Charity did not sleep well last night. She fell asleep around 10:00 with medications. She had been crying all the time until then. She woke up at midnight and cried until around 2:00 and was given some more medication, then slept until 5:30 and cried some more. At 6:35 she fell asleep again, not sure if she had meds. She slept through the doctor rounds and as I write this she is sleeping.
Communication is very difficult with Charity. She cries continually and she shakes her head. Rarely do we get a nod (for yes) from her. Everything is a head shake, (no).
Sylvia stayed with Charity last night. Charity slept quite well but it Sylvia had a difficult time gettging any sleep last night.
Charity seemed a bit more responsive this morning. She was able to give a number of appropriate responses.
Someone must have sent her the video series, CHRISTY. I've started showing it to her and she seems to enjoy it. She responded with a nod that she wanted to watch it and each time I ask her if she wants me to turn it off she answers with an affirmative nod she wants to keep watching it. She is having some muscle spasms which means her head moves some from side to side, but she seems to focus enough to follow the story.
Doctor rounds didn't reveal anything new. For the most part Charity is actually doing quite well physically. Her skin tone seems good. She has put on some weight. Knowing where she is mentally is a greater challenge.
From what we have learned of brain stem lesions and disorders, a person such as Charity has their full mental capacities. All of the thinking, talking, takes place in the upper brain. As far as we know that is all in tact and healthy in Charity. The problem is in getting it to pass through the brain stem nerves correctly. The neurologists have requested a psychiatrist to work along side them in assessing Charity and in looking for the correct medications and dosages to help Charity balance between treating the muscle spasms but keeping her alert mentally.
Today we will welcome a friend of the family, Lynn F. who will be staying with Sylvia while I return to kansas City tomorrow. June, Jeremy's mom, has also returned to Nebraska and road with Jeremy and the girls back to their home in Holdrege for part of this week.
-Phil
This morning Charity has done quite well.
- She is doing more nodding to appropriately answer questions.
- She has not been crying very much
- She seemed to follow watching the video "Christy" quite well. We watched the first dvd and she's started on the second one.
- She doesn't seem to have many muscle spasms for discomfort today.
Communicating remains a challenge with Charity. She nods more and better but its still not where she used to be. She still shakes her head NO more times than when she means no. Her muscle movements in her hands, arms, legs is still less than it used to be.
Charity, I got to teach sunday school yesterday, and I just want you to know if felt so great just to be there with the kids again. I am also so encouraged everytime I come back here and hear the countless number of people who love you and are praying for you many times a day.
I just want to say "I love you." I miss you terribly as always when we are away, but just like I wrote on your wall, you are in my heart and on my mind constantly. You amaze me Charity. You have accomplished more for the Kingdom lying there in your bed, keeping your faith, than I will in my lifetime. You're my hero.
Your girls are doing wonderfully through all of this. They are being loved and well cared for by many. They are being taught the truth. They know you love them, and they know that they are loved by God.
Bella has a doctors appointment today just to check up on that cough she had last week. She is not vislbly sick, but she does cough from time to time, so we are just going to get her checked out.
I got to go to the school today. It was very usual. Some kids are glad to see you, others are trying to figure out where they fit in and struggle even to say hello to you. I am going out to lunch with some guys I haven't seen for a while today, so that will be good.
All of this doesn't feel right at all without you being there when I get home. I miss just being able to come home and tell you the things that I am excited about that happened. I miss your encouragement when things don't go the way I hoped they would.
You and I are one. There is nothing that separates you and me. I am quite literally torn in two when I am away from you. Our love is as strong as death, as unyielding as the grave. These many waters that are rushing over our lives will not overtake or overpower the love that I have for you. My solemn vow made to you in the presence of our God, I will keep by His grace and in the strength that He will provide.
I love you. Gotta get back to work my love. I work for our King and for our family. All that I do is filled up with love for Him and you.
Your faithful Husband.
J
Early this morning Charity did move her right arm and her right thumb. This is something she has not done for quite a few days.
Later in the morning, after 9:00 however Sylvia was not able to get Charity to move either arm or thumb. Charity also was beginning to experience muscle spasms in her body.
Today they are still on track to move Charity to the acute rehab floor. Currently she is on the LTACH (Long Term Acute Care Hospital) floor. The main medical care on the LTACH floor is Internal Medicine. When she moves to the acute rehab floor she will be followed primarily by a Physiatrist (rehab medicine doctor) with consultation from an internal medicine doctor. The Acute Rehab floor is focused on trying to get Charity to recover as much as possible of her lost abilities.
Prayer especially during this time for
1. Charity to maintain medical and physical stability to put her efforts into rehab.
2. For the staff to find out what is causing Charity to be so mentally unresponsive, to help her regain mental alertness.
3. All of us as a family and caregivers to be at peace in our personal lives, and with the ongoing care for Charity.
4. For Charity to maintain emotional peace and spiritual peace with God.
-Phil
(Information from phone call from Sylvia to Phil)
Charity was moved to acute rehab today. This will be a different level of care and there will be a lot of new things for both Charity as well as her family and caregivers. We will need a lot of wisdom and strength in these days as we absorb some of the potentially overwhelming new expectations.
Charity is in real slump.
(Information from a phone call from Sylvia to Phil)
Today in PT Charity was producing zero. If she keeps up this way the insurance/medicaid will not continue to certify and cover her stay at a rehab facility.
This wednesday the rehab team will have an evaluation meeting. Pray that Charity be enabled to work at physical therapy and speech therapy.
We are still puzzled by her slump. Physically her health seems to be stable. Her heart rate, oxygen, BP, all are seemingly good. She hasn't had a serious medical setback in days. It seems to be a mental situation where either medication, fatigue, depression, or an unknown neurological condition have so clouded her mind that she is unable to put her mind to moving forward.
She does seem to recognize people and things around her. She does look at the pictures of her girls and cries.
-Phil
(Information from phone call Sylvia to Phil. We had our conversation half in Italian and half English so some information may lost in translation.)
Charity continues to be on the very low spectrum of movement, responsiveness. In Sylvia's words, she has lost a lot.
- She is not moving anything
- She doesn't seem to feel touch
- She doesn't seem to have pain
All day they have been doing evaluations and visits. She's been seen by the Physiatrist, OT, PT, Social worker etc. The rehab team will be doing their evaluation and then conferencing as a team on Thursday [correction WEDNESDAY]. Then next week, or soon after they will conference with our family and make some decisions for Charity's future.
From what we understand of the "SYSTEM" at this point is that if Charity doesn't show response, movement etc. They will discharge her. She cannot continue in "acute rehab", nor will she be able to be admitted to acute rehab at any other facility (for payment by medicaid/insurance). That means she would need to go to a nursing home somewhere, or to home itself.
Sylvia did bring up to the doctor and team the fact of all of Charity's medications, (also just having started anti-seizure medication). The physiatrist has already discontinued one medication.
Otherwise, medically Charity seems stable. She doesn't seem to be having any medical crisis, clots, etc. She is so spaced out, and not moving.
My personal feeling is a great sense of diasappointment. We had so much been looking forward to see her move the next step to acute rehab. We felt like in acute rehab she would be able to see the "best" that Madonna has to offer. There would also be other younger people in this program. She had even been on track physically. The lesion has not been enlarging. There don't seem to be any neurological developments from the lesion. She had been improving physically. But something has set her in a slump and this slump may disqualify her from being able to continue in the program here or anywhere else.
-Phil
(Information from phone call from Sylvia to Phil)
Today the rehab team will meet and discuss Charity's case. They could decide Charity is not a candidate for further rehab. We hope they will at least give her several days/weeks of trial to understand why she has hit this slump and what the cause is. We still think a lot may have to do with the recent medications she is on for seizures combined with at least a couple of other anti-depressants and mind affecting muscle relaxants.
Sylvia has been very impressed with the medical care that has continued in the acute rehab. OUR THANKS TO THE STAFF AT MADONNA.
Medical Update
- Charity slept quite well last night (Sylvia also got some sleep).
- Charity's oxygen saturation did lower into the 80's bout 3-4 times during the night, setting off the alarm.
- They considered giving her oxygen but it kept coming back up.
- They are doing special respiratory treatments with a mask.
- Before going to sleep Charity did have a significant coughing spell.
-This morning Charity was shaking her head and doing some affirmtive head nods.
- She does cry a lot
- She still has NOT been moving any limbs, except when she is having a muscle spasm.
Pray for:
- The Madonna staff as they meet and consider Charity's case.
- Charity to experience Christ's love and peace.
- Charity to be enabled to move. Pray for victory in the emotional, medicine, and physical battle.
What is "acute rehab" and "long term acute care, LTACH". LTACH is a level of care that focuses on medical care and stability. The attending physician is an Internal Medicine doctor. They also compliment that with rehab therapy. Since it is considered "hospital care" it is covered by Charity's insurance.
Acute Rehab instead focuses on rehabilitation. The attending physician is a physiatrist (rehab medicine doctor). They really work hard at the rehab therapies. Their license as a rehab unit requires that they can actually move patients forward in rehabilitation. Most rehab centers will not accept rehab patients unless they can put out three hours a day of therapy.
- Phil
Charity, I know you better than anyone. I know what you must be thinking about. Oh my dear Charity, all I have to give you is my undying love and complete devotion. I will love you forever for who you are, and I will love our daughters for who they are.
I know who you are. You are not defined by the circumstances that you are in, or the decisions that are being made about you, around you, and even in front of you. You have my heart, and I am willing to endure whatever comes WITH you. WITH YOU. and FOR YOU.
I lay you at the feet of Jesus. Please lay us, at His feel also. Let this be the most costly and beautiful sacrifice we ever make, and let us do this together, and so overcome this life together. If we endure, by God's grace, we will recieve the crown of life.
In a little while Charity, in a little while we will all be home with Jesus. This isn't forever my love. But I pray that your faithfulness to Jesus will be sung about in heaven and on earth by countless witnesses of Christ's power in you.
I LOVE YOU CHARITY. I JUST LOVE YOU. I WANT YOU TO KNOW THAT I AM PROUD OF YOU. I AM SO PROUD TO BE YOUR HUSBAND.
Do you remember the picture on my wall. The picture of us as children on opposite ends of the world? You are on a high place in Italy, and I am at the beach in Delaware with my dad behind me and to the left? Do you remember what it says on the back?
Just remember that I have not and will not ever forget what it says.
Faithfully,
J
Sylvia just called and said the Madonna staff wants to talk to her about Charity's meds. That will happen at about 4:00 pm central. She needs wisdom, understanding and a continued good rapport with the staff. We appreciate their effort to try to understand and help our daughter.
-Phil
(Information from phone calls from Sylvia and Amee to Phil)
How were our prayers answered this afternoon? We learned from the rehab team meeting is that if Charity doesn't show good improvement it will be unlikely that Medicaid will cover more than 4 weeks of acute rehab. So Charity does at least have a window of possibly a month, BUT she needs to be moving forward.
Sylvia met with the PA who will be filling in for the week during a planned absence of the Physiatrist. Sylvia was impressed with her expertise and compassion. [ It seems the PA was already acquainted with Charity's situation from following it on this web site at their church]. Actually Sylvia has been very favorably impressed with the new team taking over Charity's care at this new level of care. We've been through MANY team changes during these 120 days and you face each change with deep uncertainty. The teams we've liked, we've wept over when they had to change service.
Sylvia and the PA were able to talk in detail about many aspects of Charity's case. One of the things the PA seemed to refer to was the importance to get close following by a neurologist or neurology team.
Sylvia's and Amee's Medical Report
- Charity's white blood count was up indicating an infection somewher.
- The main suspect would be another UTI (urinary tract infection)
- They are doing the cultures for that.
- There were problems with the catheter and a urologist needed to be called.
- Sylvia felt Charity was a bit more alert later in the evening than she had been earlier in the afternoon.
- I understood she was spelling some things with the gaze board, (not totally correct) but at least working at it.
- Amee felt like Charity was more alert today than the last time she was with her.
- I understood the Charity did move her leg and an arm today.
- Charity continues to do quite a bit of moaning, or crying, some of it seems to be related to discomfort/pain in the stomach.
Justin and I will be traveling to Lincoln tomorrow, (a day earlier than planned).
- Phil
Since Charity has just changed care levels, and next week Sylvia and I will be gone on a road trip (both Mission related and Justin to college), I came up a day early to Lincoln. It's good that Jeremy and his girls are also here. I have two goals to accomplish during this time. 1. Is to understand Charity's care situation, needs and future planning we need to be doing as a family. 2. To put together a schedule and plan for next week when we will all be absent a good number of days.
Pray for us as a family as we meet in the next day or so and try to put together some reasonable plans for the future.
How's Charity Doing today:
It's almost 10 pm and Charity has been sleeping a good hour. She slept quite well last night. She is responding reasonably well to yes and no questions by nodding or shaking her head. She did move one muscle in her right leg for the therapists. She HAS NOT MOVED ANYTHING ELSE.
Medically, Charity seems to be doing quite well. Her lab tests today looked great! The PA said looking at the lab papers, she's a healthy girl. She is showing the stability that we wished for weeks ago, but doesn't have the mental clarity nor movements. Why can't everything work together at the same time? We seem to gain one thing and lose another.
Justin is enjoying being with his sister. His "magic" for her today took the form of reading the Bible to her and praying with her.
We need to get together as a family today and do some planning.
- We need to finalize plans for next week when we are gone and make sure we communicate that clearly with the staff here.
- We need to have several possible plans of action for the future at least thought through and agreed upon.
Charity was having some spasms this morning and HR spikes over 140. I hope nothing dramatic happens to get in the way of us family getting together today.
Charity seemed to sleep OK last night, and SHE MOVED HER THUMB, for me this morning at 7:58. We would love to see other movements.
Justin added a new link to this site. At the top menu bar there is a link INFORMATION. Three things are there. Information on contacting us or Charity, information for sharing in Charity's uncovered expenses, information on other needs some may be interested in helping with.
The insurance/medicaid has certified Charity's stay for one week. That expires next Friday August 31. Charity will have to demonstrate documented improvement in this week for her time in rehab to be extended.
AND THIS WILL BE A DIFFICULT WEEK TO KEEP HER ENCOURAGED, because there will be a lot of family absences.
If some of you, (that are good friends with Charity, able to connect with her and encourage her), have available time in this next week, we welcome your participation. Click on the link above INFORMATION and see if you could be here for one of those time slots.
Sylvia reported that Charity slept quite well last night. Before I left the hospital, Charity was having a good fit of spasm, but meds at about 10:30 helped relieve that and she slept most of the rest of the night. This morning she was having more spasms but sometimes just repositioning her, washing up, etc. seems to help a lot. So we look first to helping her with something other than meds.
Pray specifically for Charity to make daily progress in therapy. If this is the Lord's direction for her life to continue therapy here at Madonna, she will need to demonstrate improvement during this week that many of us will also be gone for big chunks of time. Her girls will be in Lincoln most of the week with Jeremy's Mom so she may get visits from them. Charity seems to really hang onto those visits from her husband and girls.
Pray also for Jeremy as he has the weight of many decisions and potentially some major ones coming up.
-Phil
(information from phone calls from nurses and Connie)
This was Charity's first night alone in the hospital without family since May 8 (except for the times when she was in ICU).
The nurses reported that Charity did well. She slept and when the morning nurse came on (usually around 7:15) Charity was resting well, in fact so well that they put off her shower until 10:00.
Laura is with her now and she is doing well.
- Charity's vitals were good
- She is answering questions appropriately with nods and shakes.
- She does some crying but it doesn't seem to be overwhelming.
Connie was with Charity last evening. She hadn't seen Charity for over a week and saw her more alert than she had been previously. Sofia and Isabella visited Charity last evening.
We are SO grateful to June George for the hours and hours and days she has dedicated to those girls. Especially she has been superb at helping the girls not be afraid of Mommy and knowing who Mommy is. For an unprepared child going to see a person in Charity's condition could be frightening. Isabella loves on her and comes to see her with excitement.
-Phil
Charity continues to do much better. She is very tired it seems to me, but she is still answering questions appropriately. Medically she is looking extremely good as far as I can tell, which I am very thankful for.
Tomorrow will be a key day in that her therapists hopefully will see improvement in her physical abilities. She can move her thumb again on command and even her right arm.
I sense that Charity wants to keep working at rehab, which amazes me so I would ask that all of you would pray that there would be demonstratable improvements this week physically so that she can keep working at rehab here.
If the insurance company thinks that she is not, she will likely be coming home next weekend. If Charity wants to keep working, lets pray that God will allow her that opportunity.
I am tired, but only because I arrived in Holdrege last night, had two very important meetings today at church and have already driven back and am at Charity's side watching "Pirates of the Caribbean," one of our favorite moves of all time. I was in bed with her holding her for some time tonight which was awesome.
It feels good to be able to connect with my wife even in small ways, knowing that she is present mentally when we are together. That does so much to encourage me.
Anyway, today was and is a good day. By the way, thank you to all of the parents who came out today and to all the kids. Wasn't that FUN??? I had a great time watching all of you. It just felt great to be in that room with all of you, though I didn't get the chance to connect with all of you in the way that I would want.
Thank you all. Also thank you to those who are going to step up this year and serve with me in the youth ministry of this church. I am so excited to work with all of you again, and looking forward to those of you who are coming on for the first time in my tenure here.
Good day. I found myself thanking God today for a good day. HOnestly, I haven't felt so free to do that in a long while.
Jeremy
Today there is a little life in Charity's left hand. I am sitting here watching her therapy session and she has closed her fingers and just very slightly opened them.
There is a bit of a concern I have though. Her right hand and her left hand have a considerable temperature difference which can signify a blood clot forming. Please pray that that won't happen.
Charity conitnues to be alert.
Jeremy
Do not give Charity Roxicodone.
PS. She doesn't react well to that stuff.
Jeremy
Charity has slept most of the afternoon. It is all my fault. I let her get some pain meds, that have completely wiped her. She has participated in all her therapies, however.
PLEASE PRAY that her sleepiness will not keep her from staying at Madonna. She really seems to want to keep working. The staff here is recording every bit of progress so that they can report that to the insurance company.
Please pray that she will sleep tonight and be ready to go for tomorrow. I am concenred that since she is sleeping now, that I will be up all night with her. That means that I will likely not be able to get back for a very necessary couple of days of work this week.
Charity remains very stable medically. She is doing very well that way. She is even responsive in and thorugh her sleepiness. Today the speech therapist read her a short story and asked her all kinds of questions. As she was in and out of consciousness, she was ABLE TO CORRECTLY answer ever question that she was asked. It was very apparent she understood and answered correctly.
So that is good.
Jeremy
Charity is still responsive and her stats are good. She however has had to be suctioned like 10 times today. That concerns me a bit to be completely honest. The last time she needed to be suctioned that many times after not needing to be suctioned in countless prior days was when she threw a clot to her lungs.
That concerned me even more due to that temperature difference that she had in her hands. That has since ceased to be true however. Her hands are both equally warm from what I can tell. Her left hand, the one that was cold this morning is now maybe even a bit warmer than her right.
I feel pretty helpless to be honest. There is nothing anyone can do really. I wish there was a way to know for sure, but I guess not knowing is par for the course.
Charity is about to go to bed after being in her chair for about two and a half hours. She is ready for it. She is practically falling asleep.
Please pray God's protection against clots. And for me, because I am so tired of this yo-yo we are on. I am seriously tired of it. SERIOIUSLY TIRED OF IT.
It seems like we bounce back and forth from preparing for the worst and the excitement of improvement. An endless series of disappointments and glimmers of hope, which often turn back into disappointments and so on, and on and on and on and on and on and on.
Sorry. Just venting some frustration there.
I seriously love all of you and so appreciate everything you all do for us. We covet your prayers.
Thank you again.
Jeremy
(information from a phone call from Carol H. to Sylvia this afternoon)
The word that describes Charity today is determined. From my phone call from Carol, it seemed that Charity had a pretty good day. She was able to make some new movements for her physical therapy and occupational therapy sessions. They had her upright in a special machine for about 7 minutes, but back spasms forced them to put her back in bed again. After a while they asked her if she wanted to try again, and she nodded "yes". She then was able to stay upright about 10 minutes.
She was not able to make sounds for the speech therapist, and when Carol asked her afterwards what she wanted to do, she seemed to indicate she wanted to keep trying to speak. Carol said she worked on it over an hour and finally had success in getting sound out. She practiced for a long time afterward.
Charity has always been tenacious, and it did our hearts good to hear that she still had some of that determination today, and worked so hard.
I am so grateful to friends who are helping out this week. Thanks to all of you. You are a tremendous blessing to us. Phil and I are in Texas. Justin began classes at LeTourneau today. We will be doing some travelling for the mission in the next few days. Our hearts are very much with Charity, and knowing that she is well cared for is such a comfort.
Please continue to pray that this week she will have the physical and mental stability to show improvement so that she is able to continue in rehab.
Sylvia
I talked to my mom last night. She said that you did awesome yesterday in therapy. I just want to say that I continue to simply beam with pride when I think about you. Thank you so much for working so hard these long months, through this fiery trial, for us. I deeply appreciate you. I am so in love with you, and extremely proud to be called yours.
-J
This morning has been rough in that Charity has been in a lot of pain. Really, every hour on the hour last night Charity woke up with alot of pain.
We stayed away from the hard core narcotics though.
Charity has had some NEW MOVEMENTS today and yesterday.
Today she pushed with both legs at the same time ON COMMAND three times, and once in the presence of a PT. Also, I was stretching Charity's hamstring by holding her leg up in the air as she laid down, and with alot of NEW STRENGTH, she pulled her leg down toward the bed ON COMMAND.
THESE ARE HUGE BREAKTHROUGHS. Charity's hard work is paying off. To be honest, I was completely amazed, and SURPRISED.
I think Charity is encouraged, but not able to enjoy it very much due to some pretty prolonged and uncomfortable muscle spasms.
Jeremy
Charity lifted her knee against gravity and lowered it in a controlled way.
She also said, although not with great precision, the word, "how." It was the beginning of a great conversation about heaven.
Charity still wants to be there with Jesus. She knows that it will be better there with Him. She made that very clear again. I leaned in and said, "He's really all we've ever had. Nothing good He has given to us, has been given to us forever, except Himself." She nodded in agreement.
I hope that encourages you as much as it has encouraged me today.
Jeremy
I just got off the phone with Lori. She and some of Charity's friends from Holdredge are watching Nebraska play football. Charity seems to be watching most of the time. She is calm, and answering with nods and shakes of the head appropriately. Unfortunately both yesterday and today she had some pain medication which may have interfered some with her performance in therapy. The Lord has blessed her with such good friends who are encouraging her to keep fighting and keep working hard. Thanks so much.
Yesterday she seemed to be tired and did not want to have anyone there for the night She seemed to need some space. Today she was really tired and sleepy and fell asleep during some of the therapy sessions. We aren't sure what of that is due to medications. Her spirits are good, and all in all seems both stable physically and emotionally.
Phil and I head back to Lincoln tomorrow. Phil is officiating at his nephews wedding tonight. So many of you have helped during this last week, and Charity did well.
Tuesday at 10:30 we have a scheduled FAMILY CONFERENCE with the medical and therapy staff of the the acute rehab team at Madonna. We think this is when we will hear about future plans for Charity and insurance coverage.
Charity, I was reminded today about what life is all about. It came in the form of listening to "Praise Baby." There is a song that says the following...
It is in giving that we receive.
It is in pardoning that we are pardoned.
And it is in dying that we are born to etermal life.
Make me an instrument of Your peace.
I want to know what its like to follow You.
It reminded me of a glorious hope that both you and I share, that will forever be ours. COMPLETELY.
It also reminded me that this is not the end of your story. This is not all that will be written about you. Your life goes beyond all of this BECAUSE you belong to Jesus, the indestructible one.
You are an instrument of God's peace. When people examine your life, they see His authority, peace and love permeating it.
Our lives are but a breath, which is good, because our suffering will not be forever. It is better than good because SOON we will all be home, and we will dance in the presence of Jesus.
I love you. Keep focused on your hope. Let it be the fuel that gives you the strength to keep fighting. I am going to continue to do whatever it takes to make your desires and wishes become a reality. It is my highest calling in this season of our life.
Please know that I love you passionately. That will not cease to be true.
I love you.
Remember that He is all we ever had, and that we will never be without Him. I hope that brings freedom to your soul, and a smile to your face as we wait for our God to redeem our lives, and to deliver us.
J
Sylvia and I arrived back in Lincoln to be with Charity around 4:30 pm today. Tammy E. was with Charity. We are so thankful for so many of you who gave your time, expense, physical strength, and emotional energy these past to be with Charity. We saw the evidence of your time with Charity in the notes pinned on the walls, Calendars kept up to date, etc.
Charity seemed quite attentive when we arrived and well cared for. We understand she didn’t sleep well last night, and hope tonight she can catch up on that. We brought Charity to the apartment and her sister Amee with her family arrived. Charity seemed to enjoy the evening together with family around her.
We think we detected that Charity missed her own kids. That’s good to see her participating in the events of life.
Tomorrow is labor day so not much will happen around here. Tuesday we have a family meeting around 10:30. This is an important meeting with the rehab staff. I think Jeremy will be connected via a conference phone. This is a big week for Jeremy as he launches this year’s youth ministry program in Holdrege.
-Phil
Today Charity woke up to day 133 in the hospital after a fairly good sleep. She slept from 8:30 until 12:30 then was up with muscle spasms and a few times of sleep until 3:30. Then she was repositioned again and slept pretty much until 6:30. She had some medication for spasms around 2:00 am, (Ultram).
They don't have a lot of therapy scheduled for her today. Tomorrow will be the meeting with the rehab staff.
During the night, when Charity was having her spell of muscle spasms. I was reminded that people around the world were praying for her. I was just praying that this would not be another ruined night of sleep for her. I am thankful to the Lord for graciously giving her sleep last night.
-Phil
It's labor day, a holiday for most, but Charity is having a full schedule of therapy as well as doctor visits. She has definitely made progress since moving onto this rehab floor. It's hard though to objectively know how much Charity has objectively progressed since mid May. She makes steps forward, and then has a relaps. When she comes back from the relapse its hard to know if she goes forward farther than she was previously.
Objectively Charity has improved medically. Her body is healthier than its been since coming to Madonna. It would be great to see the three big areas work together effectively at the same time, 1. medical stability, 2. strength and fatigue 3. mental alertness. If she could get those three working well at the same time we think we would see some great progress.
As I write this the therapists are moving Charity by hand into the wheelchair. They are taking her to a therapy gym to put her in the standing frame.
She's in position on a mat.
They hook a sling around her.
One person holds her securely behind her.
One person guides her while a winch lifts her in place into the standing frame.
She's standing with the sling in place with her arms on a table.
She's holding her head very good.
Some back spasms start affecting her.
Then they put her arms into a "skateboard machine"
I walked into Charity's room last night, and it was as though I was kicked in the stomach all over again with her illness. It is so hard to see her this way. I find myself so weak, and I don't want to be. The theme of my life has been to know God. I am learning so much, and most of it is how little I do know. He is beyond all I have ever imagined or thought. I look at Charity, and am so emotionally slain that I want to put Him into a box that questions, "why" or "where is His compassion" or "please not my daughter". Then I remind myself that as God taught Job, "Will you condemn Me that you may be justified?" Will the faultfinder contend with the Almighty? Let him who reproves God answer it."
Job's response as he began to know more of God: "I know that You can do all things, and that no purpose of Yours can be thwarted...Therefore I have declared that which I did not understand, things too wonderful for me, which I did not know."
Today I sat next to her and felt thrown into a pit of despair. The Occupational therapist came in and I was pretty engrossed in my own emotions as she worked with her. Then, suddenly it was as though Charity had a mind of her own to show the therapist what she could do, and in spite of the therapist working on her left side, Charity began lifting her right arm. She seemed to increase movements as both the therapist and myself watched. The therapist was really excited because she demonstrated "external rotation" which means that she has internal rotation. I'm not absolutely sure I understand it all, other than that I know that the Lord was helping her to concentrate on moving things and I am so thankful. She moved her shoulders on command, and her thigh. She is once again struggling to get sound out, and was not successful at all with the speech therapist.
Some of her medications have changed again, and we need wisdom to know what to say, how and when. It seems to us that some of the medications have a lot of potential for conflict with each other. Tomorrow at 10:30 is our meeting with her doctor and therapists. Please pray about that. So much of her future care is hinging on it.
Thank you for praying. Please continue to pray for Charity’s progress, the meeting tomorrow, and each of us family members. We need the Lord’s strength. We desire to say with Job 42:5 “I have heard of You by the hearing of the ear; but now my eye sees You.”
-Sylvia
Today on day 134 we will have our family meeting with the rehab team here at Madonna. Sylvia and I will be present as well as Charity herself. Jeremy will be joining the meeting via telephone conference call.
I did hear from Charity's Case Manager that the insurance saw enough GOOD PROGRESS in Charity the last week to certify another seven days. So that will take us through to this Friday, Sept 7.
I'm not sure how well Charity slept last night. I got the impression is was not a fantastic rest, nor was it terribly bad. Sylvia stayed with her last night and said Charity had a few seizure like episodes during the night.
This morning when I cam to the room, Charity was quite alert and responding appropriately to my questions. She responded that she wanted to be in the meeting today.
She was having some muscle cramps (upper body and legs) I stretched those and did some range of motion. She did NOT want to have her neck or back rubbed, maybe because of the seizure like activity.
We did do some reading from the Bible in Italian, reading notes from people on her web site, reading the testimonies, and then reviewing the prayer requests on her site. She seemed to follow those prayer requests as we prayed for the various individuals.
Later this morning I head back for Kansas City and Sylvia will stay on here in Lincoln. I know she would appreciate visits from those who could give her a break from the hospital. Jeremy as well as other CareGivers and ourselves have been also trying out times where we just let Charity alone sometimes. It seems she wants at times to just be left alone.
Tomorrow is a big day for Jeremy as he has the "kick-off" for the fall youth ministry program in Holdrege. Sylvia and I will also be gone for several days next week for our Avant annual conference. The week after that I will be gone to a camp, depending on what the situation is with Charity's care Sylvia might come along on that camp trip as well.
I sat with Charity in some of her therapy this morning, PT and Speech. They put her through some unique moves, stretching and excercises.
One of her biggest battles though is consistent determination and purpose for moving ahead. Some of the PT stretching is a bit painful, but she needs to stretch her hamstrings to get her muscles moving and ability to stand.
Charity made some intentional sounds during speech therapy, an AHHH sound. It's a real challenge to modify that sound to an EEEE, or an AHHH with her lips closed.
The pain, and difficulty seeing results has a tendency to lessen her determination and purpose for keeping on trying. Pray with us that in the days and weeks ahead the Lord would strengthen the determination in Charity's heart and mind. To be determined even when she doesn't "feel like it".
-Phil
Sylvia, Charity and I met with the rehab team today and Jeremy was with us over a phone connection. All the various areas were represented, OT, PT, Medical, Psychology, Nutrition, Nursing, Social Services.
Overall they have seen Charity make improvements. If she continues to improve her stay and opportunity for continued rehab will be extended.
The Doctor is trying to get Charity off as much medication as possible to find that balance of keeping her as mentally alert as possible, yet treating extreme discomfort or pain when necessary.
They will be trying to gradually move Charity to "bolus' feeding. Where they take her off the feeding tube pump and instead give her food with a sryng at intervals during the day, more similar to a normal three or four meals a day. This will liberate Charity from another tube and give her more freedom during the day and night.
They are working on trying to figure out a consistent way of communicating with Charity so that all departments and family will know and use the same way of communicating with her so we can get more consistent communication with her.
We also talked about future plans, after Madonna, whenever that may happen. Tomorrow they will assess her for a wheelchair. Other issues coming up are transportation and housing. Many big issues but we'll all take one day at a time.
Thank you for praying. The meeting overall was positive. Keep praying for Charity's determination to persevere through the ups and downs of her medical, fatigue and alertness battles.
-Phil
(information from an email from Sylvia to Phil & Jeremy)
Charity had another of her "I can't close my eyelids" nights. This phenomena seems to come in cycles. She was finally given vallium, about the only strong drug left in the "arsenal". They have increased her baclofen toward the evening to help with muscle spasms, but she still suffers a lot from them, and they seem to be what keeps her awake. She groaned a lot and indicated the pain seemed to be from the spasms.
She finally fell asleep for an hour at 3:30 but woke againe at 4:30. Sylvia was so tired from the night before that she just slept through a lot of Charity's groaning and calling for her. Charity fell asleep again around 5:30-6:30.
This is an very draining for Sylvia, physically, emotionally and spiritually. Please pray for her in these days. It's so hard to understand God when you are drained and tired and see your daughter continue to suffer.
Today they are evaluating Charity for a wheelchair fit. They will also continue to document Charity's progress, or no progress in her various therapy's. These results will determine discharge or extended stay in acute rehab.
-Phil
(Information from phone call from Sylvia to Phil)
Sylvia called me from Lincoln and the highlight of today was that Charity did a good job in PT. She was in the standing frame again. Joyce who had seen her in it before saw improvement. Sylvia noticed that Charity was really trying hard to get those muscles working again, so hard that she worked up a sweat.
At a certain point Charity was shaking her head to the therapist that she didn't want to do anymore, but Sylvia seemed to catch a signal (that maybe only Mom's see in their kids) that Charity wasn't shaking her head no to doing it again but that she wanted to rest. So after resting she came back and continued the therapy.
They switched Speech therapy (SLP) placing it before OT (occupational therapy). That seems to be a help to give her a more rested body when her mind needs to be engaged. Again is seems that Charity may be shaking her head NO, not necessarily as a "no I don't want to do this" but maybe "no I can't do this", maybe vision, muscle control etc. may be imairing her.
So overall, Sylvia was saying this was one of those days of HOPE, that gave us reason to keep moving ahead and try to "fix Charity". To keep up our research, therapy, looking for ways to open up her world.
Pray with us for the following:
1. To be enabled to move forward with research on understanding Charity's condition, diagnosis, and rehabilitation. The lesion in the brain stem could be a catalyst that has activated multiple other neurological phenomena that are not caused by the lesion itself. There is very little research, and not much known in this specific field of brain stem lesions and "locked-in syndrome (LIS).
2. Pray for the search and guidance in what happens after Madonna. What are the alternatives? Pray for Jeremy who has the full burden of making those decisions.
3. Pray for the certification this week, that Charity improve enough her stay can be extended. We feel the team at Madonna is putting their best effort forward. In some ways they are just getting up to steam on understanding her, her disability and the best avenues to improving Charity's life. They continue to carry on their own research in what needs to be done. We sure don't want to lose a team like this that is willing to look at, consider, research and try everything humanly possible. Her stay is certified until tomorrow. Will there be another week?
-Phil
Tradurre questo sito in italiano diventa un'impegno notevole. Ci sono giorni con pocca attività, altri giorni con molteplici aggiornamenti. Mauro ci aiuto quanto possibile, ma delle volte c'è troppo da seguire.
Se ci sono altri capaci di tradurre dall'inglese in italiano contattami al email: phil1972@mac.com Forse possiamo dividere un pò l'impegno così tutti i nostri ami