Starting up the bowel

We have restarted trophic feeds again. It is the first attempt again at feeding since March, when Peter started getting ill (from flagyl?). We started by clamping the G-tube a little bit each day until we hit our goal of being clamped for 12 hours a day. And we started feeds (elecare) with 1 tsp three times a day. Now we are at 2 tsp three times a day. The goal is 3 tsp three times a day, and then we are headed up to Boston for another check-up and a more rigorous testing of the bowel under controlled conditions.

I am excited to go up and resolve the question of whether the bowel works or not, as well as to see our third and final surgeon about whether Peter's bowel can be reconnected or whether we need to go on to transplant. The docs have been optimistic as much as they can... hard to know what to tell a parent when a child is doing things that have not been done before... as least as far as the liver goes. Peter should be getting chronically worse with his cirrhosis and his bleeding should be increasing and energy decreasing and he should be getting sick more and more. We don't see that... and we are thanking God every day!! To say that he is overcoming all of his health issues is hard to say. Maybe he is resolving some of them, or maybe he is just in a good place of equilibrium for now.

We will be testing his bowel function while we are in Boston by feeding him more aggressively and testing what comes out the different ostomies to see how well things are digested. We will be testing the liver function with a methionine breath test, which is still experimental but less invasive than a liver biopsy. We will also be looking at Peter's nutrition and determining how well his TPN is meeting his needs and what should be adjusted.

Peter's anemia is improving more and more since he stopped bleeding and since we put him on IV iron. His last hemoglobin was 9.9!! Platelets were only 68 though... they still are not normal. Labs generally improving over the months, but I can't say truly normal. The portal clot likely is still our biggest culprit of all of Peter's problems, as it continues to produce high pressure in the liver/portal system, affecting the spleen, possibly the intestine, and likely the liver too. Nonetheless, we are now at lab draws just every other week. CRP abruptly returned to normal three weeks ago and is holding at normal.

We are looking forward to showing off Peter's other progresses such as his walking and talking. A year ago we were still being transported to Boston with a medical flight crew and ground and air ambulance. Now we are driving up, Peter enjoys the ride, and we are planning whether or not to bring his walking toy or just have him hold my hand while PETER walks around the floor! Amazing!!