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The evening report

We saw our celebrity-ish doctor again this afternoon for about 30 seconds (that probably cost us $300 :) when he came in to ask how the impedence test was going. I told him how Raya has been on pretty much her best behavior today, i.e. NONE of the usual 5-7am retching & vomiting, no vomiting the whole day, only a couple of gags/dry heaves the whole day, etc. He said not to worry about it and that even though those symptoms weren't at their worst today, there was probably still a lot going on that we can't necessarily see and I think he was right. She had a LOT of her little "wet hiccups" like (pardon my grossness here) when you throw up a little in your mouth & then swallow hard. I was also watching the numbers on the little data box and I don't know if it was like the one we did before where it was measuring the pH in her esophagus but if it was, then I really feel bad for her. The number ranged from 9.8 all the way down to 1.0, which seems really crazy and maybe even impossible for it to get that low, so that's why I'm not sure if that's what the number really was or not. I have no idea when they'll have any information for me about that test but I think they plan on going over things with me before we go home.
Raya was a lot less irritable & fussy today than yesterday but she still wasn't happy most of the day. I was SO glad when 4:30 came along and they removed the probe & we could take off the arm braces and let her play. The only annoying thing now is that they have a different kind of feeding pump here than the ones we use at PCH and the one here is really easy for her to pop the tubing off of. It's annoying.
So the plan for tonight is that she gets about 3 more hours of relative freedom before the IV team will come and place her IV. She has to stop feeds at midnight for the test they'll be doing at 8:00 tomorrow so we've fed her all day instead of giving her the usual breaks. She's been having a lot of G tube drainage today since she's still off of the med that helps with her motility. I think after her IV is in and she goes to sleep, I'll probably go back to RMH and take a shower in a non-yucky hospital shower and sleep on my nice comfy bed and then come back early again tomorrow like I did today. It worked out great and I really REALLY appreciated having a break from worrying about Raya's feeding pump & medications.


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