Raya got to have her first real swim since she got her G tube last fall. Being the paranoid person that I am (and seeing all the nasty bugs & misc. floaties in the kiddie pool) I decided to cover her GJ with tegaderm (a thin clear waterproof adhesive). We have an ample supply of it since we never used half of what home health sent when she had the NG tube and even though she hasn't had that for 10 months they still occasionally send it. :) Anyway, here's my attempt at waterproofing her:
It ended up being pointless because it only lasted about 10 minutes once we got in the water and then it came off. I had to use 2 pieces because the tube is so huge and she was being really squirmy so I probably didn't seal it well enough. Oh well, at least I tried. :) This tube doesn't fit as snugly as the last one so hopefully nothing bad swam in there while it was exposed.
When I took the extension tubes off, she kind of panicked. She picked them up, lifted up her shirt and tried to put them back on. When she couldn't do it, she held the tube out to me and made her little grunt noise that she makes when she wants something. It was one of those funny but sad moments. She's definitely not used to having no tubes taped to her stomach!
I don't have any pictures of her in the pool last year because I was always the one holding her in the pool, and this is the only one I got yesterday for the same reason. :)
She wasn't a huge fan of swimming. She seemed conflicted and I think it pushed her limits sensory-wise. She definitely wasn't afraid of the water but she could only stand being in it for a few minutes at a time and then she would want me to stand up so she was out of the water. She was back to how she used to act when she'd want me to pick her up and hold her but not really touch her. She sat on an inflatable lounger for a few minutes and liked that until water started filling in around her. I tried putting her in a baby float ring but she HATED that and wouldn't stay in it at all. Most of the time I just held her. There's a stair/bench that runs the entire width of the pool in the shallow end so she stood on that for a little while too and held on to the side of the pool or played with a toy that was on the pool deck. She also sat on the floating lounger while it was sitting on the pool deck. :)
It seems that Raya eating beans was not a fluke. She wanted more yesterday while the kids were eating their "lunner" (late lunch/early dinner). Or is it "dinch"? Well, anyway, she wanted more beans because I was eating some so I gave her a 1/4C measuring cup that has a 1/8C line in it and filled it up to the 1/8C line. She chowed down and ate all that she could get out by herself so I filled it up again to the 1/8C line. She ate that too and followed it with some water, most of which ran down the front of her. She pointed to the bib and said, "Wet! Wet!" :)
Since we had gone to OT (the therapist was out sick & nobody had told us) and then went swimming, I had only drained her stomach twice for about half an hour each in the morning. I figured 2 hours after she had eaten the beans that it should be ok to unclamp her tube but as soon as I unclamped it, beans started coming out. Then they stopped coming out, meaning that the tube was clogged with beans. I flushed it with about 30ml of pedialyte since it was hot & we had been outside a lot and then clamped it again. I tried again a couple hours later and figured that 4 hours after she ate, there definitely shouldn't have been beans left but once again, the beans started flowing and clogged the tube. I flushed it again, tried it again at 9:30 (6 hours after she had eaten).
By 11:00 she had drained 25ml of fluid but beans were still coming out and clogged it again. Since I had flushed it 4 or 5 times since she ate and it had been 7 1/2 hours, I really didn't think there should be any beans left. Her drainage was only 115ml for the whole day, which is a fraction of what she was having so this is good. I'm definitely feeling better about being able to switch her back to a G tube but given that it took over 7 hours for the 1/4C of beans to be gone out of her stomach, I'm wondering if we might run into problems with delayed gastric emptying (DGE) again.
She had a great session with her feeding therapist today, which was shocking after how awful her PT session went this morning. It was the worst PT session she's ever had (except that she used to vomit at PT and she didn't do that today) and I will still be surprised if none of our neighbors called CPS because of all the screaming that was going on. :) She was a big huge sensory mess for her PT and then took a short nap, which I woke her up from when her feeding therapist came. I filled her in on what's gone on with the bile drainage situation since our last visit and what the doctor's plans are for next week and then gave her the oh-so-exciting news that Raya ate beans two days in a row. We sat her in the chair, which she was excited about, and started with the last of the beans I made. Her FT actually took a picture of her eating because she was excited about it. :)
Most of the session was discussion about things we could try with her. Since she is now actually swallowing something, our next objective will be to get her to start chewing and using her tongue to move the food around in her mouth to where it needs to go. (that's why she loses most of the water that goes into her mouth before she can swallow it) We still need to go slowly with advancing her to new foods just in case there are allergies. Basically we're just going back to the point where most babies are at 5 or 6 months of age when they start on solid foods except that she can pretty much feed herself. :) We're going to focus on foods that can be made to a similar pasty texture as the beans to start with and avoid anything that will aggravate her reflux. We have a lot of ideas now of where to go next so I'm feeling better equipped to keep her progressing while we have breaks from therapies for the next few weeks for therapists' vacations.
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