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Friday, April 20, 2012

From MicKey to Mini

Raya has been a member of Team MicKey since October 2010:

When we had her G tube surgery follow-up appointment, I had picked out a Nutriport G tube. It had several features that appealed to me after having dealt with a Bard button for a month. (Bard buttons don't have a locking mechanism to keep the extension tubes from coming unplugged, which equals a LOT of messes, especially when it's in the stomach of a 9 month old who gets fed 22 hours a day.) That plan was foiled when Raya started having gastric bleeding and had an endoscopy with a failed attempt at a GJ tube placement. Since the hospital only had MicKey buttons on hand, we went home that day with a MicKey G tube. At that point, I didn't even care that it wasn't what I had picked out at the surgeon's office because it was 1000x better than the Bard button. :)

A month later Raya was still having gastric bleeding and a whole lotta' out-of-control vomiting so she was admitted and got a MicKey GJ button. She had that until last July when her little tummy was finally ready to be fed again and we switched her back to a MicKey G button. I've been told many times since then that the AMT Mini ONE button is better than the MicKey button, that it's smaller, lower profile, etc., but for whatever reason (like maybe my resistance to change) I've stuck with the MicKey. Until yesterday, that is. :)

For about 10 days, Raya's stoma has looked a little iffy. Somehow we've made it through 20 months of having a G tube without any stoma infections and I feel very lucky about that but the streak had to end sometime I guess. :) It started out with a lot of redness in her scar tissue followed by spreading of the redness and red streaks extending out from the stoma. Then there was the excessive amount of goop, crustiness, funky sweet smell, general irritation, etc. It really didn't look BAD but it looked out of the ordinary for Raya:
There was also a little red spot that you can see on the left side of the picture. It looked kind of like a pimple so I started to worry that it might be MRSA or something. We went in a few days ago to get it swabbed and in the mean time, it's definitely looking better so hopefully whatever it was is running its course and we won't need to put her on antibiotics. We'll be seeing GI this week and find out if anything grew. In the mean time, we're being very careful and keeping it covered just in case but it's looking a lot better.
So to make a short story long, due to the ridiculous number of times that her MicKey button has gotten pulled out in the last 9-ish months since we went back to a G tube, I decided it was time to try something different. Two things drew me to the AMT Mini ONE:

1. It's MUCH lower-profile than the MicKey button which means less likelihood of the tube getting caught and pulled out when Raya's climbing out of her crib or accidentally kneels on her extension tube and rips the tube out:

2. The shape of the balloon that holds the button into the stomach is different. Here's a comparison of the balloon shapes:

I'm hoping that the wider, flatter balloon shape will help keep the tube from popping out so easily.

Our new GI nurse ordered the tube for us and I made the switch yesterday. Out with the MicKey, in with the Mini!
I'm already asking myself why I waited so long to try it. :) Don't get me wrong, I had no problems with the MicKey button, it just seems like maybe this button is a little more suited for a very busy girl who has a knack for getting her tube pulled out. :)

3 comments:

  1. HOORAY for team Mini! I love mine! I hope it works well for Raya too. :)

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  2. We also love our Amt Mini One. I hope it works out well for you all.

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  3. Thank you for your pictures and insight. Looking to change from the bard and while doing some online research came across your post here. So grateful you have shared this!

    ReplyDelete

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