Big belly, plans to unfold

Peter hit his ascites goal weeks ago.  We have been maintaining an abdominal circumference of 67 to 68cm, occasionally hitting 69cm.  He is four and a half years old, and had been wearing size 5 overalls to accomodate his belly, prior to trying to increase his girth.  He is now in a size 7/8 overalls due to the increase in his belly.  He is still unable to be fed overnight, and needs to be vented through his G tube instead.  His face is still puffy with the extra fluid.  His hydroceles repair has withheld through all of this extra fluid, but he does appear to have two bilateral areas of swelling above the scrotum now, seen when he exerts.  It will be good when we can stop needing him to hold onto his ascites.

The plan to do surgery is still uncertain.  We are going up to Boston soon and will meet with Dr. Jennings, Dr. Kim, and Dr. Kamin to discuss exactly what to do.  We are set up for surgery in late July if the best plan seems like it is surgery.  Before that talk, we will have an abdominal ultrasound to assess where the ascites is accumulating in the belly.   Hopefully the abdomial fluid is causing expansion in a way the the surgeon feels is helpful. 

To add some confusion to the overall picture, Peter's fistula output has gone down since the ascites has gone up.  To help understand this, we have now started trying to increase daytime feeds again to see if the fistula output goes up as we increase feeds.  If the output does not go up much as we increase feeds, then it may cause the doctors to ponder whether surgery is necessary at this time.  Recall that the increase in fistula output was the cause for the consideration of surgery at this time.  I am guessing though, that if we lowered Peter's ascites again, the fistula would pick up again.  What I mentally picture is a pocket of fluid that pushes on the intestines in a way that pinches off the fistula opening so that only a little fluid comes out, and when his ascites is less the opening opens up further.  The docs seem to picture that possibility too, but we have not captured that in imaging tests, so it is hard to know.  It could also be that Peter had some kind of GI bug that threw his gut out of whack back in December/January, and that with the reduced feeds and with time, it settled out and that is the cause for the fistula output going down.  Hopefully we will get to advance the feeds enough before we go up to Boston, that we can see if the change in feeds affects the fistula.  We are hoping that the surgery can happen during the summer when the cold and flu virsus levels are low.  If we have to return home again and wait further to see how the fistula performs with addition of more feeds and reduction of ascites again, it looks like we will not have that summer advantage, and there will be more waiting as we watch to see how feeds and fistula output go. 

We count our blessings that Peter is the pleasant, happy child that he is.  It is hard for us to be patient with all of the uncertainty sometimes.  In his sweet little ways he gets us through those times and reminds us to enjoy the time we have now.  We went blueberry picking today and it was just great!  (Of course, I left the camera at home though.... again.)