Wordless Wednesday

Transplant Eval Day #4 and Going Home

Mark met with the pharmacist, looks like Medicaid will pay for some stuff and not for others and when John ages out of Medicaid there are programs to help him afford his anti-rejection medications. Personally I'm hoping that at that point John has a really good job ;)

The Upper GI went faster than the last time, 2 hours instead of 4, is this good news, bad news, or completely indifferent, I haven't a clue and probably won't know for a couple more days. It sounds like good news to me, but I've been wrong before.

Mark's meeting with the surgeon went rather well too and we finally got an answer to why they take part of the stomach - new organs are a different size than old and they have to make them fit without pleats, tucks and darts. Once it came down to a sewing issue I could wrap my brain around it.

We could have headed home last night, but the roads were snow covered all the way home and I have caught yet another really bad cold so am miserable. The roads are clearer today, I'm still miserable but really miserable at home is much better than miserable anywhere else.

There will be no formal decision about listing John for transplant until next Wednesday afternoon when the whole team meets, but at this point both the surgeon and the GI doc seem to think that the best idea is to address the ureter, kidney reflux issue and then give John 6 months without his kidneys being irritated all the time and see what happens then. We do know that if they decide to list him later down the road there will be no need for a repeat of most of the tests that were done during this eval week, including no discussion of putting John through a barium enema or even an upper GI again.

So in the end we have no real answers, honestly I don't guess we should have expected any, John is a hugely complex case and when he was born there was no discussion that prune belly kids could even have a bowel transplant. So here we are, right firmly in God's gracious hands, raising the most amazing boy we've ever met and waiting to see what God's will is day by day. It's time to go home, get school started back up, go to our new sign language classes that start next week and walk each day in the faith and hope that just as God has provided all of you dear friends and family, He will provide each day exactly what John and we need.

Transplant Eval Day's 2 & 3: Brain Freeze

Mark told me that I really need to update this. I'm trying. I will admit that my brain is frozen up and I'm having a hard time processing all the info right now. So let me just start with thank you's again, the prayers and encouragement are amazing and oh so needed. Secondly let me tell you that John is capturing the hearts of everyone who deals with him and yesterday when the GI doc was talking to him he told him that 'he is now thinking about what to do to help him so hard that his brain hurts!'

The Psychiatrist is impressed with how happy and well adjusted John is. Child Life had presents for him and ways to help us explain all about transplant when the time comes for those explanations. His blood pressure was beautiful today, labs are looking great and all in all if it wasn't for pesky gut issues even the doctors have to admit they wouldn't know that anything was wrong with the kid.

The Brain Freeze for the mommy has come with the information that one of the surgeons tends to remove enough stomach that the child no longer is able to have a g-tube and has to have an NG tube until eating/drinking enough to not need any tubes. Two of the surgeons do this some of the time and one of the surgeons does this only when absolutely necessary. The surgeon on duty at time of transplant is not a choice of ours but of scheduling and therefore I have to remind myself also completely in the hands of God's timing.

Tomorrow John has an upper GI to go through, mom and dad have appointments with pharmacy and social work and dad is graciously taking the appointment with the surgeon because he's a great dad and husband and knows that there is just no way that I can go have this discussion or get the details of surgery and John surely doesn't need this information right now either.

Hopefully the roads will be clear enough that we will get to leave for home tomorrow. They were bad enough that we didn't get to go to Epiphany services but at least we are inside, safe, warm, together and got a much needed nap :)

Transplant Eval: Day 1

Thanks so much for your prayers and well wishes and encouragement, it is constantly amazing to us how many people care for John and for us and how blessed we are with these friends and family.

The first day of evaluation is over and went oh so much better than we had hoped and I had feared. The big event of the day was the visit with the transplant coordinator and it was so positive. We are still processing all that we heard and read but it sounds like there is real hope that a transplant, if deemed necessary, can be successful and give John a life set free from his current gut issues and where he won't have to fight for every nutritional inch he gains. John spent the appointment being his most cute and silly self, exuding love of life from his every pore and by the time the appointment was drawing to a close the transplant coordinator was telling him how much she loved him and that they would help him get better and he would outlive her. It is always amazing to see just how quickly people become attached to John, but then it shouldn't surprise us because he stole our hearts in mere seconds. She gave us a run down of how the whole procedure of transplant eval, decision, list, waiting, surgery, recovery and maintenance, overwhelming to say the least and the first year sounds both hard and scary. She was able to answer some questions that had been nagging at us for a while, like why people would go for years without rejecting and then all of a sudden reject - most of them have stopped taking their medication as prescribed and let us know that they have people who are 18 years out from their transplants living normal lives.

Today John is off with dad getting an abdominal ultrasound and having more blood drawn. They draw enough blood for testing that the first thing they do here is a type and cross so that they can give John a blood transfusion before he goes if they've drawn enough that he needs it. He will also have his normal clinic appointment today where we will get to visit with the doctors about an idea we have brewing to see if John can either avoid the transplant list for a bit longer, or wait on it without infection after infection. The most dangerous testing for John was scheduled for today, but thank God it has been canceled, his last barium enema pushed bacteria through his gut wall and into his blood stream, so they are going to use the films from it and not put him at risk that way. We are relieved beyond words.

We got to spend yesterday evening with our friends, will get to go back this evening and will get to attend church with them on Wednesday evening for Epiphany. I cannot tell you how much it means to us to have these dear friends who share their time and home with us and to get to be together in Christ's Word this week brings joy and contentment to life, even when it's scary.

Happy New Year and Prayer Request

First Happy New Year! We are thrilled that by God's grace we have entered yet another New Year with the most amazing little boy we know, with friends and family who love us, each other to hold on to and God's promises that He will be with us, and you, through each day.

This is a copy of what we put in the bulletin this week to help explain why Mark needs to be gone most of next week and while John's schedule for the week is going to be pretty intense it will still leave us with time to go and see our dear friends a few times and maybe even find the little boy a new pair of shoes as he is just about out of his favorite ones.

Pastor asked me to write something for the bulletin to explain why John was needing to be in Omaha this week. I will try, the simple answer is John is going up for a transplant evaluation. Of course the simple answer only barely skims the surface of what is going on. John’s gut has never functioned correctly and since Mother’s Day of last year has had a very hard time functioning in any kind of stable mode. While his last surgery in May was a success in that he woke up and survived is true, but all in all things haven’t improved much and he has continued to need IV nutrition. The times that he has been in the hospital since this summer have been because his central line has gotten infected by the bacteria that live in his gut. These infections have been manageable so far, but they continue to get worse and the fear is that one of these times they won’t be able to treat with antibiotics either before he is so sick that he dies or suffers irreparable damage from the infection, or that the bacteria won’t be susceptible to any antibiotics and he will die from the infection.

During this week John will go through a battery of tests, some simple and easy others uncomfortable, embarrassing and for John dangerous, also many interviews and assessments and in the end a team of doctors, nurses, social workers, therapists and others will sit down to decide if John is a good candidate for a transplant, if so what exactly they should transplant (small intestine, liver and possibly other organs as well) and if he is now at the point where he should be listed for a transplant or if there are other avenues of treatment that they should try before taking that step.

Pastor and I will be with John through each test and interview, some of the interviews even have as much to do with us and our ability to care for John as they do with John himself. This is a scary process for us, both as we consider what it would mean that John would need/have a transplant and what it would mean if he needs one and is not a good candidate at this point for one. As always we remember that when John was born we were told that he would not survive to leave the NICU and through God’s grace and mercy we just celebrated his 6th birthday.

We would ask you to pray for us through this. At the outset of John’s life and our travels as parents of a chronically ill child we had a very wise pastor advise us that we were not in this for ourselves, and we were not where we were (at that time in the hospital) solely for John, but that we were surrounded by people who were dying without the gospel of Christ and that was our gift to give to them even in the midst of our own sorrow and fear. We pray again as we get ready to make this trip that his advice will ring soundly in our ears, that we will see the troubled people around us at the hospital and be able to give them a Word of comfort and joy. Pastor and I determined during John’s first week of life that we would make sure that each day he had was the best it could be no matter what he had to go through, where, or how few of days there were and we pray also that we can make these days of testing be the best that they can and not let our fears and worries overshadow our faith and joy in being the parents of this amazing little boy who brings joy and smiles to all who see him even when they are having a bad hospital day.

Contemplating the Impossible to Fathom

John is on yet another round of antibiotics for a central line infection. This time he is actually on similar meds as last time but the bugs are a bit more tenacious and nasty. One of them has a reputation for becoming resistant during treatment and so this time he has to have a clean culture before he can come off the antibiotics completely. Throughout this infection John has looked pretty healthy and has done quite well but we all remember well the days when John's central line infections rendered him very ill indeed and no one who was there can forget how close we came to losing him from sepsis and just how awful that sepsis is on a little body. At one point during his worst sepsis episode he was swollen almost beyond recognition, his heart was so weak that he had to be kept sedated and medically paralyzed because each time he woke up he would nearly die because he would get upset with all the tubes and wires and such. No one wants to see John have to go through sepsis again, nor any person.

John's gut is having a very hard time getting itself in gear. When he is on IV antibiotics he is doing well and his g-tube feeds can advance to the point that it looks as if he will soon come off the TPN and be able to get rid of the central line. Shortly after being off the IV antibiotics the bacteria in his gut go bezerk and he stops being able to tolerate feeds at all. We are one more time trying to get the bad bugs in his gut under control so that feeds can go on again. This is a more aggressive attempt than we have ever seen and while we have hopes that it will work we have an equal amount of fear and worry that it won't. John has never had great motility in his intestines and because of that he has places that bacteria can camp out and do bad things, who knows if antibiotics will be able to touch them there.

At John's last IRP appointment in Omaha the doctor told us that it was time to start considering a transplant evaluation for John. They are not giving up on IRP (intestinal rehabilitation) but if John's gut won't pick up and work there will come the time that damage from TPN and danger of a central line infection that won't be able to be handled and will lead to sepsis and possibly death will become greater than the risk of transplant. At the time that John was born the neonatologist told us that because of his dual diagnosis of short gut and prune belly that John would never be able to receive a transplant no matter how bad one was needed. Dr. Mercer, from Omaha, explained that in the 6 years of John's life many things have changed and that these rules are no longer so cut and dried. These 6 years have brought many advancements in intestinal transplant as well and as I look around on the internet and read everything I can find it seems that intestinal transplant is no longer the 'kiss of death' and is getting more successful with each passing year. The survival rate for 5 years out from transplant is now 60%, frankly when talking about my kids life that doesn't seem like much, but then I make myself remember that is over triple the chance that he was given to ever leave the NICU alive.

We have agreed to the transplant evaluation, this is basically a fact finding mission to see if John needs and is elgible for a transplant. We were told that this doesn't obligate us one way or the other, nor does it mean that the IRP team will drop him and not try to continue to care for him. Scary stuff indeed, but then I read things that tell that children with successful transplants have a quality of life that is the same as that of their peers. My mommy heart wants to scream NO and hide in the farthest corner holding on to John as tight as I can to make sure that he never leaves me but when I put my selfish inclinations aside and look at this from the stand point of what is best for John I realize that if he needs a transplant and if he is elgible for one that a successful one is really his best chance at freedom. Over the past couple months that John's gut has been misbehaving and that he has been receiving full nutrition through TPN we have seen John make huge strides in his maturity, his muscle control, his signing, his expressive language skills, his everything, and when I look at it objectively I know that these strides are there because he wasn't struggling for nutrition. Who knows what John's brain and body could accomplish if it wasn't daily fighting for enough nutrients to get by.

So I contemplate, I wonder, I worry, I pray, in the end I know that it is Christ's hands that John has been in all along and that I too rest in those hands which leads me to pray for wisdom that Mark and I will make the best decisions for John.

Home!

We didn't make it to see Wyatt graduate from Boot Camp but we did make it to spend some fun times with him and all of our family in Montana. John had a great trip and made it home looking great and already asking about getting on more airplanes, his family and such. Vacation was good, home is nice, and I'll post pics and details and such over the next few days - I have lots!