April's check-up

Peter just had another check-up in Boston. With a little over a pound of weight gain since the last visit six weeks ago, and a consistent increase in food intake, we had been excitedly anticipating a decrease in TPN. Then six days before our visit he developed an episode of high ostomy output which lasted four days and resulted in a weight loss of three pounds, even with IV fluid replacements. Throughout it all, Peter acted well, although he was frustrated that he was very limited in what he was allowed to eat as we tried to use dietary management to get the diarrhea to stop.

We think it was a GI bug, as two of his siblings have had subsequent GI distress, but neither of them had symptoms to this degree. With his possible short-gut and with a high ileostomy, it would be expected for Peter to have greater response to a GI bug though.  As his ostomy is back to normal now, we will resume feeds as before and hopefully see the weight gain again.

What concerned the CAIR team that there may be more to this situation though, is that Peter’s BMI measurements indicate that he has had long term weight loss, and that his weight gain since the last CAIR visit may be only fluid gain, not real weight. There is a remote chance that the diarrhea really profoundly affected him, and that is what we are actually seeing with the BMI measurements, but since it is so hard to tell, the plan is to come back in another month to check up on him again. (And I used to think that going there every two months was often!) Meanwhile, we will give Peter a little bit MORE TPN, instead of the decrease we had been anticipating a week ago, to help him avoid nutritional deficiencies if he is not really aborbing all he is taking in enterally. If he puts on weight quickly, then we can likely cut back on the TPN again and chalk up the weight loss to the diarrhea, but no one (including us) wants to see him get any more gaunt than he is at this point.

Peter has demonstrated great health resilience in the past, and he continues to do that now, never slowing down through the weight loss. We are glad that he feels good, but it confounds the situation as to how seriously to take his weight loss. As such, even though the monthly travel is stressful, we agree it makes sense to return again in a month and reassess how he is doing at that time.