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Pop goes the MIC-KEY

Raya was about due for a tube change anyway, I just wasn't planning on doing it today. :) The balloon on the tube had its own agenda though. She was in bed not taking a nap this afternoon and we heard her start crying the "Mommy, I need help" and "Ouch" cries simultaneously so I went in to investigate. She hasn't been crying when the tube comes out lately but she was this time. Crying with a smirk. The balloon on her "tubie" had popped, although I'm not sure if it popped because she pulled it out or if she pulled it out because it popped. Either way, it was time to fix her flat. :) It's really strange to see her empty stoma. It really does look like a belly button. I've never seen any other empty stomas to compare it with but hers has some pretty thick scar tissue built up around it and I think that has helped prevent granulation tissue. Ironically, the scar tissue IS a result of granulation tissue... I remember the first time her tube got pulled out. It was only about 2 months after she'd had her surgery and only a couple weeks after she'd had the non-balloon Bard button replaced with a MIC-KEY balloon button. I left the room to sir whatever I was making for dinner and she crawled around the corner of the couch and popped the tube right out. I didn't really panic but I'd be lying if I said my heart wasn't racing when I stumbled my way through putting it back in. Then I sat back and realized that it really wasn't that bad. Sure there was partially digested formula all over both of us, the floor, the blanket, our clothes, etc, but that was pretty much the worst of it. Putting the tube back in was a piece of cake compared to putting the NG tube back in. Once I got that first one behind me, I didn't feel intimidated by it anymore and now it's just part of life. It's happening too often for my liking lately though and one of these times it's going to come out and not go back in. Anyway, here's the old and new tubes side by side: I noticed that there's a rather large piece of the popped balloon missing. It's either in her bed or in her stomach. I guess we'll see. :) After I put the tube in, she sat up and started playing with the " winn" (syringes) and extension tubes that came in the replacement tube kit. Next thing I know, she's pulled up her shirt and plugged in the extension tube by herself. Donny was quick enough to clamp the tube just before the formula came gushing out, thank goodness. She's a smart little cookie. We'll have her trained to feed herself one way or another by the time she's in school. :) Kaida will be so excited that Raya got her tube changed. I told her that next time I had a broken tube, I'd put it in her doll so she'd have something with a tube too like Raya. :) Speaking of which, Raya has laid claim to my first "Tubie Friend". I did one so that the people in charge could make sure I was following directions and doing it right, and I took Raya with me to get it stuffed. We had a couple others to stuff that didn't have tubes in them yet and she liked then but didn't really care that much and wasn't even interested in holding them. Until she saw the finished one. The second she laid eyes on it and said, "Mommy! It have tubie!" I knew I wasn't getting it back from her! :) She has since named her bear "Tubie-rina" and she is totally smitten. :) I hadn't really even planned on making her one because she already had the G tube doll I made her and because teddy bears have never really interested her. As it turns out, if a teddy bear has a G tube, she's VERY interested in it. :)


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Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

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That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

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Feeding Tube Terminology: G tube words

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Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …