Charlie used to get about 30 oz of fluid every day and that was more than enough. She'd sometimes pee completely out of a disposable and you all know those things hold a TON. Well, with her getting sick, we had to cut back her fluid intake. She just won't tolerate the rate she used to. I JUST got her calories back up where they were before and she gained back the pound she lost. And I got her up to 27 oz of fluid a day. Which really isn't too bad. Of course, this is hard to do, but we manage. We draw up 6 10 ml syringes of apple juice and 3 10 ml syringes of water and put them in a cup in the fridge. We make it our goal everyday to get every last one of them in her. The apple juice goes in her Gtube, with about 3 mls of water to push it through. And that leaves a little to flush her Jtube a couple of times a day. So that's 3 oz total, on top of the 24 oz she gets through the pump.
So she's been having days where her pee will be dark and stinky. Not horribly so, but enough to make us take notice. But then she will have several good days so we end up not worrying all that much. Well, yesterday, she peed the tiniest bit overnight and it STUNK. Like maple syrup. There's a disease called "Maple Syrup Urine Disease" and I looked it up and untreated it can cause brain damage and seizures and eventually death. But she doesn't fit it at ALL. For one thing, they screen for it at birth. For another, symptoms usually start in early infancy. For yet another, IF something like that caused her brain damage, it wouldn't have happened AT birth...it would have been later. So I know realistically none of it fits, but to pull up a webMD page that basically describes my daughter in every other way...what a mindf&*# ya know? I think it's purely coincidence that her pee smells like maple syrup. I know it can have all sorts of funky smells when you are dehydrated.
Her nursed cathed her and very, very little pee came out. So we stopped her feeds, ran pedialyte at a higher rate, and called palliative care. They said if she gets puffy and doesn't pee to call them back. Well she did pee but she also looked kind of puffy. And I remembered that this is not the first time this has happened. I never put it together though. There's been a few days in the past few weeks that she looked puffy and a few days that she had slightly sweet, maple-syrup smelling pee. Never at the same time though and never bad enough to concern me. But apparently this is not a new thing....it's been creeping up on us for weeks.
So we got 43 oz of fluid in her and she was peeing somewhat normally. It wasn't dark and stinky anymore, but she didn't have a heavy overnight diaper like normal. I know this is NOT normal. A 21 lb child who isn't up running around and sweating and stuff shouldn't need 43+ oz of fluid. Especially considering 27-30 oz was plenty up until a few weeks ago.
I put her back on formula this morning but she went back to not peeing and was also retching something fierce, so back onto pedialyte she went. The palliative care nurse will be out first thing in the morning and we will probably take her to the close to home center for a blood draw. I won't drag her up to Children's and put her through a bunch of tests. We can pretty much guess at what this means...her kidneys aren't functioning correctly. And no matter what happens we will only do as much as it takes to keep her comfortable. Maybe she'll bounce back...maybe she won't.
Oh Miss Charlie, you do have to keep us on our toes, don't you?