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Saturday, June 7, 2014

G tube drama

We've had some G tube drama around here lately. We replaced Raya's tube on May 5th, with a shiny new AMT Mini One button, complete with new glow-in-the-dark feed port. Raya thinks it's pretty awesome that her tube glows in the dark! It doesn't really do much for me as far as helping me connect in the dark, which is the intent behind the new GITD tube & extension sets, but she likes it so whatever. :)

Unfortunately, my frustration with the Mini One is growing. We switched from a MIC-KEY button to a Mini One in April 2012, after way too many accidental pull-outs with the MIC-KEY. The balloon shape of the Mini One made it MUCH more difficult to pull out, and the smaller exterior button kept it from getting caught on things and pulled on. Overall, our experience with the Mini One has been great, but I'm reaching the limits of my patience with the one thing I don't like about it. For whatever reason, every single Mini One button we have ever used has ended up with the balloon being lopsided to varying degrees. Sometimes it's just a little bit lopsided but other times, like this time, it is so lopsided that there is barely even any balloon left on one side of the stem. This is a side-by-side shot of the lopsided one and the brand new one that we replaced it with:
As you can see, the balloon on the left has gotten very out of shape compared to the one on the right, with its wide, flat, apple-shaped balloon. I can't imagine that the one on the left could possibly be comfortable, nor does it accomplish its purpose of forming a good seal around the stoma. Her stomach started leaking shortly after we put the tube on the left in back in May. I chalked it up to her recent decrease in motility, and that also played into it, but the tube was largely to blame. Even worse, when the balloon shape changes that much, it makes the tube much more likely to get pulled out. Twice this week, Raya's tube has been pulled out accidentally while she was playing with her brother.

Since the tube on the left was less than a month old, I called our home health provider and let them know that it was defective and we needed a new one and the sent one out right away. I also contacted AMT and sent them pictures of the lopsided tube. They are a great company and they do appreciate feedback from consumers, so I always try to give useful feedback. Kimberly-Clark (MIC-KEY manufacturer) also likes to hear feedback from consumers.

Anyway, we've racked our brains for the last 2+ years to figure out why her balloons always end up lopsided like that. If it sat in the same position in her stomach without ever twisting around, I would assume it was conforming to the shape of the inside of her stomach, but it moves all the time. It twists around constantly, so I am convinced that that's not the issue. I know there have been times when a brand new tube has had a slightly lopsided balloon when I have inflated the balloon to check for leaks before putting a new tube in, but they never start out as lopsided as they end up. We may have no choice but to switch to a different button if this keeps happening because we can't send her to school with formula running out of her stoma and a balloon that will pop out too easily.

On an amusing note, I had posted this picture in a facebook group and it was pointed out to me that the picture makes the tube look disproportionately large. :) Now I laugh every time I see it.

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