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.

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