Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 .... just when you thought the waters were safe.... We've been on those straight tracks way too long. Well, time to hold on and grit our teeth. Kody's been declining rapidly over the past several days. He started with just increased GT output, originally just a few 100cc. THen, his button (it is TAPED ON) had caused a nasty cut on his stomach. We removed it and placed a corpak GT and inflated the balloon, GT ouput up to over 50cc/hr (normal with an inflated balloon for him). He began to loose so much, we deflated the balloon and taped the GTube in.. over yesterday he got up to over 150cc/hr.. we piggybacked IV fluids with his TPN and incresed the time from 12 to 15 hours. He also had an elevated temp yesterday (back down at the moment). Now the drainage has become very dark green/brown even (NOT RED). I know you all will understand that my calm acceptance is turning into terror. It scares me to death when we can't get any fluids to stay in him.. I worry that it will not turn around this time. Does anyone else get the sickening feeling like you are watching this disease slowly kill your child? I'll update when I can, but I am certain we'll be making the trip up north today. Keep us in your thoughts. I'm having a really rough time keeping my cool. He lost over 1500 cc in the last 24 hours. (idiopathic eosinophilic esophagitis, GT, former TPN'r) and mom to five boys, all with EE, three with GTs and one on TPN (kody) Quote Link to comment Share on other sites More sharing options...
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