We don't know if it was the Gerber stage 1 lamb or the change from a flat ostomy dressing to a convex one, or just something bound to occur, but something has changed with Peter and things are not really flowing through now. He started backing up and out his gastrostomy site more and more, and then vomiting, all around the time we finished up our three day trial of one tiny jar of baby lamb. We eventually had to put the old MIC gastrostomy tube in with a foley attached and just leave his gastrostomy to drainage full time. We still can't keep the tube closed off even for a few hours without gastric contents and bile leaking out around the tube. With all of this, the duodenostomy now puts out nothing at all.
His labs do not suggest infection and temp is fine and generally he acts fine. His electrolytes got slightly out of kilter with the extra drainage from the stomach and he is now on IV normal saline for 12 hours at night to balance that. The electrolyte imbalance may be why he was slightly off in bahavior the last few days.
It seems that a little of his body fluid passes through from the stomach and works its way to the ileo, but we are not giving him any Elecare or kefir now and definitely no baby foods. He is getting water for drink when he wants anything, but it mostly all comes back out the open gastrostomy tube. Right now we are just waiting to see what comes of this episode. It has been going on now a little over a week!
Stopping feeds and having to reattach another drainage tube is of course disheartening. However, we are extremely grateful that Peter is still home and that he is not in distress. Admittedly too, it is nice not having the problematic duodenostomy to deal with, and the G tube leaks very little around the dressing at the moment. How's that for a silver lining?? Hopefully the next post will be about the resuming of feeds... soon.
Still working on getting the Boston Commons photo up.
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