Feed the kid...

...that is the first advice from the GI doc in St. Louis. Yes, we are back in St. Louis Children's Hospital, we came by ambulance yesterday. The doctor's at University in Columbia decided that John needed more expert care than they were able to give and so sent him on to Columbia. John's docs in Columbia are WONDERFUL and one of the things that we have always appreciated about them is that they know when it is time to send him for more expert opinions.

Here John is in the hands of Dr. Rothbaum, we love this man. He is an excellent GI doctor and has taken great care of John in the past. He got in to see John last night and listened to what was going on and his first recommendation was 'if the kid is hungry feed him'. John didn't have his hearing aids in when this discussion happened or I'm sure he would have levitated out of the bed to the food, as he had been asking for food since Tuesday afternoon. As soon as the docs left and I told him that he could eat, he was so excited and he ate a cup or so of cheerios, lol, it was the only thing I had readily available but he didn't care, he sat up on the bench in his hospital room and fed himself cereal until the very last crumb was gone, what a happy looking boy!

Tuesday when the decision came down that the Ileus was real and that he need to not be eating I explained to him that usually his food went in his mouth, down his throat, in his tummy and through his intestines into his diaper but that now his intestines were sick, and so his food was going in his mouth, down his throat, in his tummy and then getting stuck in his intestines and that was what was making him hurt. After I told him this he looked at me, I could see comprehension dawn and then he collapsed into sobbing tears. After that he would ask for food and I would tell him that his intestines were sick and he would look sad but we could move onto a book or toy or some ice without him throwing a fit, or getting upset. I am constantly amazed at the maturity in this child's head and heart.

Even with the sadness of being ill and being in the hospital we had one of the funniest moments with him yesterday. One of the nurses came to sit and talk to him and she was telling him that she had a baby in her tummy, he looked and me for explaination and I signed and told him that she had a baby in her tummy, and he got the biggest eyes and most incredulous look on his face. Today two of the staff came by to visit with him and they too are very apparently pregnant and he kept looking at them and we told him that they too had babies in their tummy's, the look on his face was priceless. I got to thinking about it though and this would be the only largely pregnant women he has seen in a long time, I wonder if he is putting it together in his head that his speech therapist is also pregant, that should be interesting when we get to go back and see her.

So today, he had a good night last night and woke without puking or anything this morning, he ate a few bites of breakfast but not much, played for a while and then we could see that he was going downhill a bit again. He's down for his second nap now, all he wants is ice and he's not looking as good as he did this morning. Doc's orders are to let him eat as much or as little as he wants, put him back on his home routine g-tube feeds and watch to see what happens. The pediatric radiologist here, who has done serveral upper GI with small bowel follow through tests on him says that yeah, his gut is slow, but not horribly worse than it ever has been. So we are watching and waiting to see what happens.

Mark came in last night and is going home tomorrow, then he will be back on Monday for a couple days and then go back home. We still have absolutely no idea whatsoever how long John will be here. While he's here we're bending every ear we can about the nutrition stuff that we've been reading about to deal with bacterial overgrowth and to increase absorption in the gut, we are hoping that while he is here we can address the not gaining weight issue. I'm sure the medical staff will be as glad to see us go home as we will be to do so when the time is right. Meanwhile we are relearning how to live in the hospital, reading lots of books and working on learning more sign language. Depending on how John is doing tomorrow Dad might be updating the blog if John is not up to sitting in the resource room for me to do it.

One more time I want to say thank you to everyone who prays for John and for us, we are blessed beyond measure.