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.


Barb the Evil Genius said...

As someone in a family with a lot of health issues, the medical advances being made are a real blessing.

Gina said...

Yes they are!!! I used to always say that I wish I had lived in another time period, back in cowboy days out west, but not now, nope, wouldn't trade this time period for any other!