Medical News

The nurse coordinator called this morning from Omaha.
1. John's pathology - the way the tissue inside his bowels look - is horrid, probably the worst they have ever seen and makes it no wonder that the child could not tolerate any g-tube feeds or eating much. They are going to treat this with steroids, a lot of them, and then try to restart feeds. I asked myself why we couldn't have gone this route prior to this, but steroids lower the immune system and make getting sick easier and so it had to come at this time when John has had his ureter and bladder surgery and is no longer living with a constant bacterial infection anyway. All in God's timing.
2. Dr. Mercer said that there was no reason that John's prune belly syndrome would keep him from being listed for a transplant, should he need one. This is the second time that we've heard this and still just as comforting as the first, because when John was born we were flat told that he would not then or ever be a candidate for a transplant and that the day would come when we would just have to watch him die. That day may yet come, transplant or no transplant, but for today we WILL enjoy his life, as we have each day and by God's strength and peace will continue to do so.
3. This, steroids and feeds, are still a try to keep him off transplant effort, and one in which we need to lose no time, but also one which at least has somewhat of a chance.

So we will be headed to Columbia today as soon as we get John's school done this morning. We need to pick up steroids and he gets to put his last sticker on his reward page today so he will get to go shopping for a new DS game, lol, guess I had better check and make sure that the DS is charged ;)

As far as how are we feeling about all this, hopeful, but really when we live with John, who is smiles all the time and even on the days we are most scared manages to lose a second tooth and learn how to stick the index finger of both hands, one in each nostril, at the same time and smile really really big so we won't miss the new feat it's hard not to be hopeful, at least most the time. We still seriously live in the land of Lord have mercy, but on this broken sin-filled planet there is no place to live other than under the cross of Christ where His mercy is given new each day.