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Surgery follow-up & my big fat oops (Wed 8-25-10)

Raya had a follow-up appointment with her surgeon yesterday. He says everything looks good & is healing well. The granulation tissue is an unfortunate side effect of having a tube that's too big. He put some silver nitrate on it though and there's a big difference beween how it looked yesterday and how it looks today. He meant to send some home with me so I could keep treating it but he forgot & I forgot so hopefully I'll be able to get some.

We also set a date (Oct. 4th) for taking out the tube she has in right now (a Bard button) and switching to a Nutriport button. This will (hopefully) make our lives a little easier for a few reasons.
#1-The extension tube that plugs into a nutriport button clicks in & locks in place and then also has a plastic cover that slides over the top to further prevent it from coming unhooked & leaking. The Bard has NOTHING to keep it from coming unplugged, hence the excessive amounts of tape we have to use to keep it in.
#2-The nutriport is held in place by a water-filled balloon on the inside of her stomach, which we can inflate & deflate in order to change the tube ourselves. The Bard is held in place by a plastic "mushroom" on the inside of her stomach which means that if it were to ever come out, we couldn't put it back in ourselves & would have to take her straight to the ER to have it replaced. She also has to be under anesthesia to have it taken out or put in.
#3-The extension tubes for the nutriport have a separate port to put medications through. The ones we have for the Bard don't, which means that giving her medications is a pain in the rear.
#4-The nutriport comes in the right size for her and the balloon can be expanded so that it fits more snugly against her stomach, as opposed to the Bard, which is too big & leaks unless there's 2 packages of gauze around it.
So we're pretty excited about getting the button changed. She'll have to be put to sleep for the procedure but it will be outpatient this time, thank goodness. She will probably still be on the 24 hour feeds and may be getting a GJ tube, which is a whole other post, but at least the button will be more baby-friendly.

So my big fat oops. I had turned off the feeding pump when we were at the surgeon's office yesterday so that he could look at her site & put the silver nitrate on it. That was about 1:45pm. We finished discussing what we needed to discuss, the medical assistant taught me what I needed to know about the G tubes, we scheduled the procedure to change the tube, and left so we could be on time to pick up the other kids from school. We went about the rest of our evening activities and put the kids to bed. Then around 9:45, Donny was getting ready to get in the shower & checked to see how much formula Raya had left. The bag was almost full and when he looked at the pump, it was off. As soon as he told me it was off, I realized that I had never turned it back on after her appointment with the surgeon 8 HOURS earlier. Needless to say, I felt like crap. Since the extension tube had been sitting there for 8 hours with nothing fresh going through it, it smelled TERRIBLE so I had to take it off & clean it, throw out the bag of formula, and get her a new bag with fresh formula. At least she's not old enough to realize that her mother forgot to give her 1/3 of her daily calorie intake. And on the bright side, since she was missing 8 hours' worth of formula, she didn't throw up yesterday. :)

I also learned a lesson yesterday about not leaving Raya unattended without a shirt on. I had just given her a bath, cleaned her tube site, and put a fresh dressing on it and then left the room for about 2 minutes. When I came back, I found this:

She had ripped the gauze & tape off and was chewing on a piece of tape. Honestly I was just grateful that she hadn't ripped her tube out too. Lessons learned, won't make those mistakes again. :)


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