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Friday, September 14, 2012

Unwanted button change...

Ugh. So Raya's tube got pulled out this evening. Normally, pull-outs are no big deal around here. It's as routine as a diaper change, just a LOT less frequent. We switched from a MicKey to an AMT Mini One back in April and I love it, but today has been a bad Mini One day. I tried, and tried, and tried to get it in. I used a RIDICULOUS amount of surgi-lube, the little golf tee-looking thing that came in the kit (which is worthless, btw) and a Q tip inserted in the stem. None of it worked. Want to know why? It might have something to do with her scar tissue.


Yeah. It's big. The AMT button is harder to get in anyway and that scar tissue complicates things. When I had pushed as hard as I could and her stomach was all red and she was screaming at me to stop hurting her and it wouldn't go in, I ended up getting a cruddy old MicKey button out of the emergency kit and putting that in instead. Raya NEVER cries when she gets her button put back in. Not even the times when the ballon popped while she was sleeping and it fell out for goodness knows how long. It was out for less than 10 minutes this time. I've NEVER not ben able to get it back in. I'm okay with inflicting some necessary pain if it keeps us from having to go to the ER where complete strangers who don't love her do the same thing only scarier. It didn't matter though, it just wouldn't go in. We cleaned everything up, let her calm down, and had dinner. After that, I decided I'd try one more time. I had her lay down with her blankets and tried again. I used more lube and tried a couple more times. I reinflated the balloon and deflated it again but pulled it up from the end so the tip of it was narrower but it didn't work. Still wouldn't go in. That time, she cried before I even started trying to get the tube in her stomach. It sucks to have your kid laying thee crying and saying, "No take it out!" Good thing I was having an emotionally stable day or that would have gotten to me. So for now, we're stuck with a cruddy old MicKey button that I'm sure will leak when the extension tube isn't connected.


Here's the dilemma. I knew going to the ER would be pointless. They don't keep AMT buttons in stock there, I don't have a spare kit to take with us, and they can't put her used button back in. In order to get the AMT in, she'll most likely need to have her stoma stretched. (And yes, that procedure is as awful as it sounds, especially if they try to do it without any sedation.) If we had gone to the ER, all they could have done is put a new MicKey in which would not solve the problem of the AMT not going in. (By the way, the AMT and MicKey are both the same size but the diameter of the tips is different. The MicKey is narrower and tapered and the AMT is wider and blunt.) I called the GI on call and explained everything to her and she told me to call the surgeon's office in the morning and see what they want to do. I also thought about calling home health and having them send us a new AMT but if the old one won't go in, I don't know that a new one will either without dilating her stoma. I hope it doesn't get ugly because I've heard way too many horror stories about stoma dilations. I know it could be worse and I really can't complain. We've had a good, long run of not having any problems to speak of do I guess our number just came up. We'll see what the surgeon has to say tomorrow.

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