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Monday, September 6, 2010

She leaks like a...Like something that leaks a lot (Sun 8-22-10)

**WARNING: Gross pictures ahead!!**

So my girl has a leaky stomach still. While I am still grateful that we're not doing the NG tube leakiness anymore (and everything else that goes with the NG tube), I'm also counting down the days until we can do something about the G tube leakiness. For example: yesterday I turned off Raya's pump & unplugged the extension tube from her G tube so I could clean it. (She's on a 23.75 hour feeding schedule & the extension tube gets pretty cruddy, so I clean it a couple times a day.) There's a backflow valve in her G tube that's supposed to keep it from leaking and I know some of the leakage was coming from there (maybe the valve is stuck open from being used around the clock??) and a lot of it was coming from around the tube still. Anyway, I was gone for less than 5 minutes and when I came back, her shirt looked like this:

The top of her diaper was wet and formula was literally dripping out of her stomach & leaving a puddle on the floor.

The gauze around her tube was completely saturated (it's supposed to be white, not yellowish) and the tape was also totally wet. Normally it looks white too, not clear-ish/flesh colored.

(Here comes the graphic part.) This is what her button looks like without gauze around it. (The "safety plug" is open but that's not the reason it's leaking. The safety plug's sole purpose in life is to keep bacteria out when the tube isn't in use, which is a grand total of 15 minutes a day for her, and it doesn't stay closed when the tube is wet. When she's laying on her back & there's no gauze around her tube, you can literally watch the formula drip out, especially if she's mad at me for making her lay down. :) The red junk is granulation tissue, which I still need to learn more about & am not a big fan of.


Tube w/safety plug closed:


When she first came out of surgery, her tube was nice & snug against her belly. It must have been swollen because it's not snug AT ALL anymore, & on the contrary, it's SOOOOOOO loose! You can see the stoma (aka the hole that the tube runs through) and that there's a good-sized gap between the flat bottom of the G tube and her stomach:



Here's what it looks like with fresh gauze, tape and the extension tube plugged in for a feeding (and the face she makes all the time now) :


We've had a bit of a dilemma with our adhesives. If anybody who happens to know about G tubes & such happens to read this, please feel free to make suggestions. Here's the problem. Since she gets fed 23+ hours a day right now, we need tape that will keep her extension tube from getting pulled out of the G tube while she's crawling around & playing. However, since she's getting fed 23+ hours a day right now, the extension tube gets gross & needs to be cleaned 3-4 times a day, so I have to remove the tape & clean it, which makes me feel bad every time I rip the tape off her skin. We've tried putting a giant piece of duoderm on her side to tape it to like we did with her NG tube on her face but that didn't go very well. We're trying paper tape right now but it's still hard to get off.
Well, anyway, that's what her tube looks like these days. Thankfully, it rarely leaks THAT bad & I don't have to change it 3-4 times a day like we did when we first got home with it. I don't know why it did that to her yesterday but I think it might just be leaking from the backflow valve since it's stuck open all the time. Also thankfully, we go see the surgeon Tuesday, have feeding therapy Wednesday, and see the GI doctor on Thursday. Hopefully the GI dr will have new information to discuss with us Thursday since we FINALLY had a test result come back slightly abnormal & there are now some new possibilities of what might be causing the vomiting.

**Update Jan. 2012: We're pretty well-versed in adhesives now. Here's a couple posts about ALL the kinds we know of and what they're good for:
Adhesives for NG tubes and how to tape NG tubes
Adhesives for G & GJ tubes

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