Time for CHOP follow up?

We prepared all weekend for to discuss the plan further with our GI doctor, we were beginning to feel alone again.  The isolation that comes when the doctors simply do not know what to do next and your child is getting more sick by the day.  It is a scary beyond description isolation.  We've already been down that road, alone.  We don't want to be there again.  We discuss with the GI that they would like to see us push through some reaction symptoms, to possibly trial steroids, to just try something.  We aren't getting anywhere with the plan we've had; but we are all nervous about pushing ahead and making him more sick- especially as he's already sliding...although over the past week he seems to have been turning a corner again? 

We talk more about his biopsy results and that they show that he has inflammation which results in some villi damage but that he does not have atrophy, like he did in Dec.when we did the TPN last. We know he would benefit from the added calories/nutrients to help him heal faster but he IS holding- his weight is holding, his appetite is holding, he is holding. AND the past few days, he's been doing well. And really, he's done more well than not, since his transfusion in June - so maybe this inflammation is from before that and he is on the upscale of healing?

We've discussed getting him a follow up at CHOP- it's been a year and that was the plan....to return for a follow up.  And it is becoming more obvious we need not only a follow up with Allergy, but a consult with GI and with hematology as well.  We discuss this with our GI and she is in support of us going back and getting some further insights before we make next steps.

We have a good discussion about where we've been, where we are at now and where we are going....I break down, it's been a really stressful week, I'm over tired and I've begun to fear for my little boys life. Not how he is right now- he's stable, doing ok actually but how did we get back to severe anemia? Why does he have blood in his stools and how many more blood transfusions will he have before we figure this out? I can not just sit here and treat symptoms like this, I need to be proactive in his care again....we need to move ahead of where he is at.

We decide that we can hold off on TPN for now, there is just too many other things at play here and he seems to be stable- despite the ulcer-like inflammation we visualized on scope, his body is coping. He has started drinking more of his bottles and appears to be responding well to the new/change in probitoics; so we agree that we can wait. IF he doesn't turn around, starts to lose weight, or something we do decide to do, pushes him over- we can do TPN then. GI's main goal is to maintain Little Man's health while he grows and thrives. Good, exactly our goal as well.

This is a huge relief, and my head is spinning....what a long day...