Back on TPN every night

Peter had his check-up in Boston earlier this month.  Peter is now back on 7 nights of TPN and all formula was taken away, since his ostomy outputs were so high and he was so skinny when they saw him. As much as we have enjoyed the freedom of lesser nights of TPN, we agreed that it was best to just put him back on it and get a little more weight on him. His upper arms are actually skinner than his forearms now, and his bottom just looks wasted. Ironically, he seems to feel good with lesser weight. With the adding of TPN, the other decision made was to remove all formula from his diet for a while and just let him eat what he wants. It felt like a big set-back, but we were reassured by the docs that in doing all of this, watching what happens to his ostomy output now will help in the diagnosis of why he seems to be dumping out all that we put into him. Infection has been ruled out, and we are trying to determine if this was a long-lasting transient problem post antibiotic use, an issue with his formula, or if he is actually demonstrating a need for the ostomy to be taken down so he has more bowel length to work with. (That will be another high-risk surgery, so no one wants to just go ahead and do it at this point unless he shows us it is necessary.)

The results of this have been that his ostomy output has gone way, way down, and his weight is going back up. In fact, we were able to shave off some of the volume of TPN this weekend, and even though he still has it for 7 nights a week, the next step in this process will be to start shaving off one night, then two, etc. 

But the silver lining of all of this is that he is hungry and wanting to eat real food now! So, we have been going up on his real food instead of using formula, a little each day, and so far his ostomy output is still down. He is really having a good time with food, pretty much grazing all day. It is such a blessing to see him want to eat instead of trying to convince him of the merits of drinking formula. I am still trying to work on the concept that cookies are more of a treat than part of a meal, but we'll get there. We'll likely have to add some formula into his diet again, but most likely we will be able to just do that at night if he is willing to keep advancing in real food during the day. 

I think to many people the excitement of this real foods achievement is very abstract.  I know that I would have a hard time understanding why it is exciting to see a six year old grazing on a piece of grapefruit or goldfish or tasting ranch dressing, if I had not have the experience with Peter that I have had.  He is not a "picky eater," but rather a kid who has always had such a keen interest in what other people are eating, in reading and asking about different types of food, but never with an appetite to taste them.  All of a sudden he is hungry and wanting to know what these things taste like.  It is like a whole new world has opened up for him.  As we quietly lamented the return of the TPN regime, a beautiful new dimension opened up for him!