Ultrasound results

Dr. Kamin reviewed the ultrasounds from CHOP and the good news is that there is NOT air in the liver as was initially feared. Yea!!

That being said, to be extra careful, we are going to wait at least one more week before restarting feeds, as to not blur a possibility of an unfound lingering infection rearing its head now that he is off antibiotics. Peter has had no feeds since he went into CHOP on March 14. As of yesterday though, we are allowed to give him fruit in a mesh bag again. He has been having water all along.

Peter's CRP is back down to normal. He ended antibiotics 8 days ago and is still afebrile and labs support that he is as good as he was before the emergency hospitalization. We are thinking now that maybe he did have a bowel obstruction... maybe. A piece of the wafer from the fistula appliance was found in the ileostomy appliance on day two of our admission. Possibly it balled up inside and caused a brief blockage inside his gut which is still quite unaccustomed to anything more than liquid at this point. The stricture towards the end of the ileostomy would be a likely place for something to back up. The other thing it may be though is a sort of intestinal angina, where the intestine cramps up as blood flow tries to increase for digestion but can't. The result is similar to heart angina, where a diseased heart tries to increase blood flow for an increased activity level but physically can't. I don't think we'll have an answer to this though until we retry the bowel with formula again.

We are thinking more about transplant these days... preparing for the possiblity that this bowel just doesn't work and/or this liver just can't go enough of the distance to avoid transplant. Peter still has a portal vein clot that will never go away, and only a portion of liver left from the initial surgeries, that is damaged, but spared enough by Omegaven to get our son as strong as he is now and to keep him home for over a year now. The ascites is still ever present, the spleen remains large... mainly thought to be from the portal hypertension due to the portal vein clot, vs from TPN cholestasis. The chances of Peter's bowel working well enough to get off TPN are a very long shot. This is not to say that we are done trying to use this gut yet... if the bowel works, we will praise the miracle that it will be. But if we still are getting nowhere in the next few weeks to months, then we can still say that we tried all that we could, and the new chapters of Peter's life will then contain the words "transplant" instead of "short gut."