Here's a rundown of Raya's weekend:
Thursday- drained her stomach for 4 hrs total, 245ml
Friday-3 hours total, 175ml
Saturday- 7 hrs total, 205ml
Sunday- 3 hrs total, 250ml
Monday- 1 hour 20min, 180ml
Tuesday so far- about 6 hours, 135ml (I drained it all while she was asleep though and she doesn't usually have much coming out when she's asleep)
Not so sure if the EES has been worth it. I don't know if it's really helped reduce the amount of drainage at all or if it's just because I've kept her clamped more so the bile has been going through her instead. I've been draining her for about 30 minutes after she wakes up in the morning and then for a few minutes at a time throughout the day if she starts to act really crabby when it's not naptime or really hyper (either can be indicator that something's off with her GI system). I also drain her for a few minutes before I let her eat because the food stays in her stomach for at least 2-3 hours afterward so I don't drain her for a long time after she eats. She goes to bed around 7pm (sometimes earlier) and if we unclamp the G tube after she's asleep in the evening, nothing will come out. There have been nights where I've gone a long time before she went to bed without draining her and I'm afraid to let her go all night without draining her, so I've woken her up so that her stomach can drain a little. We've tried leaving the tube clamped all night long and she doesn't vomit in the morning like she always used to but she wakes up around 5:30 or 6:00 and is really crabby until she gets her stomach drained. When we let it drain for part of the night (4-5 hours) she wakes up later and is happy when she wakes up. Usually if we go for 4-5 hours without draining her during the day, we unclamp the tube and get 60-80ml out within 5 minutes.
We were supposed to start feeding therapy today with our second FT but she decided that since she would only be seeing us once before we go out of town for a couple weeks, she'd rather just wait until we get back to start. I was a little bummed/annoyed but at least it meant that I didn't have to clean my kitchen just so Raya could mess it up at feeding therapy. :)
Since she's been tolerating eating pasty-textured food, I put some rice & black beans in the blender yesterday and gave it to her. She won't let me feed her (or help her, or be within 5 feet of her while she tries to feed herself) so she ended up with rice all over her. When I washed her off, everywhere that rice had been on her skin was bright red. None of the other food she's smeared all over herself this week has done that to her. She still didn't throw up this morning but she woke up fussy & uncomfortable, which isn't her usual.
I've always thought she had a problem with rice. One of her worst projectile vomiting incidents that I will never forget happened the weekend before she got her feeding tube. Her doctor had told me to add rice cereal to her milk over the weekend to see if we could add a few calories and get her to gain some weight. As soon as we started doing that, the projectile vomiting got worse. The evening after the first visit with the GI doctor, we went to a cousin's wedding reception. I had fed Raya a bottle before we went to the reception and she had gone to sleep. I was holding her and talking to some relatives and she just started erupting with more force than I had ever seen. It went all over me and all over her and I couldnt believe how much was coming out of her. As soon as she stopped vomiting, she went pale and limp and went back to sleep. That was scary for me because she had never done that. She was ok but we were both covered in puke and I knew right then that she was not going to gain weight by Monday and that we would be spending some time at the hospital the next week.
A few months later we had done a swallow study and determined that she needed to have her liquids thickened in order to swallow them safely without aspirating. I didn't have any of the thickener so the speech therapist had said I could try rice cereal again and see if she was even going to take liquids by mouth at that point since she hadn't in about 6 weeks. Once again, after drinking the formula+rice cereal, she puked more than normal. Then she decided to completely boycott drinking anything and I was a little relieved since it was more trouble than it was worth at that point trying to get her to. When we had allergy testing done a couple months ago, the doctor had me choose the foods I wanted to test her on and so rice was first on my list. Unfortunately one of her meds threw it off & the tests were all negative, even the positive control.
Well, that turned out longer than I planned. I guess I was just a little surprised at how much her skin seemed to react to the rice. I don't think she swallowed as much of that as she did of the beans last week. They weren't as sticky & were easier to swallow. I might blend up some more rice and put some on her skin again just to see if the same thing happens. If it does, then I'm officially declaring her allergic to rice.
We didn't hear from the doctor's office today about swapping out her GJ tube for a G tube. I'm not too surprised though since she was out of town for 2 weeks and the office was closed yesterday, and then Tuesday is her endoscopy day so she probably wasn't at the office today anyway. I would imagine her nurse is nice & busy after the long weekend. Maybe they'll forget and we can just leave things alone until we get back from our road trip. So that Raya doesn't puke in the car the whole time we're driving. Like she did last year. I can guarantee that Peptamen puke would stink up my car a whole lot more than the Neocate puke did last year. The end.
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