Thursday, January 26, 2006

Somebody take me to the loony bin!!

After an afternoon of caring for a cranky baby I pull up Evan's shirt to blow on his belly. What does my little eye spy? A belly that is free of a g-tube, all that is remaining is the hole where it should be. Horrified I hand him to my husband and rush upstairs to get the replacement tube out all the while trying to figure out when it came out. As I try and jam the tube in I realize that my worst fears are confirmed. The hole was closed! [insert your favorite swear word here]!!!!!!!! The only way to get the tube in again is to have another surgery. That means a week of the injected blood thinner (instead of the oral one he is currently on) and three days in the hospital along with several follow up visits with various people. In other words a huge hassle. An enormous hassle in a year of enormous hassles.

I am going to call his GI doctor tomorrow and pray that she will say that we should give him time without the tube so we can see if he looses weight or not. He is already doing pretty good with eating orally so he could pull this off (fingers and toes crossed). I just had not envisioned the tube coming out permanently this way. I had thought that my safety net would be there for at least a year after he stopped using it. It would be there just in case.

I am feeling a bit paranoid since pretty much for his whole life he has been tube fed. I never had to worry about making him balanced meals because I had the tube feeds as a kind of back up. Now I have to try and trick him into eating his veggies and all that fun stuff that parents of normal toddlers have to worry about.

We did eventually find the missing tube. It was nestled under Evan's blanket in his crib. It had to have come out at nap time since I had used it for his morning bolus. Every other time it has been pulled one of Evan's caretakers has been to blame and the extension tubing has been hooked up to the button. A long tube with things that will catch is asking for disaster so we try and not have the extension tubing in more than necessary. It was not in for this nap so there is a mystery here that may never be solved.

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