Sunday, January 31, 2010

Of Boats and Butts

Life as a mom is full of some of the wildest moments, things that seem to be in contradiction but really are just life...
...during Mark's sermon this morning on Jonah and Christ stilling the storm Mark had many good things to say, but when he said that in both stories we see that no matter the wildness of the storm or the fear of the people that the boat does not sink, that in our lives Christ is the boat, that the winds and storms of life may be pushing us and driving us to places that we don't want to go, places that we are scared that we won't make it through, yet Christ Himself is the boat that carries us through the winds and storms of life safely, I had to get out my pen and paper because I was not forgetting those words that I so needed to hear, of course...
...I had to get my hand loose from John who had been systematically taking my finger and making it touch every butt on every animal in Brown Bear Brown Bear and then touching his butt, we touched a few tongues and I got licked a couple times, but mostly it was just butts...
...in the end it is so much like all of life and as long as I live I will never forget the Sunday of Boats and Butts ;)

Saturday, January 30, 2010

Jump!

John is trying very hard to teach himself how to jump. This all started like any little 6 year old boy with jumping on the bed and then of course dad built him a handrail in the living room to practice walking and such and it's good for learning to jump too!

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Sword fight anyone?

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Rock on! Actually he is standing in his chair dancing to some Cream, then of course back to Pigorian Chant, silly boy. I tried playing some classical for him the other day, he listened intently for a minute or two then signed 'noise, x, more music' x being what you hit on a computer when you want to close or stop something, and then of course we were back to the theme song for Spectacular Spiderman and some MC Hammer and Will Smith, the boy likes a beat :)

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Friday, January 8, 2010

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.

Wednesday, January 6, 2010

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 :)

Tuesday, January 5, 2010

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.

Saturday, January 2, 2010

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.