Anyway, she had a total of 360ml of drainage yesterday. That's 12 ounces. It might not sound like that much but when she only gets 30 ounces of formula and another couple of ounces of water, 12 is a LOT. Today has been pretty much the same story except that she didn't have the 30 minute crying/screaming/writhing session followed by vomiting like yesterday so that was nice. She seemed to be feeling a bit better today but the drainage just keeps on coming. I've had a couple people ask me what exactly is draining out of her and what it looks like so here's what we're dealing with:
It's mostly bile mixed with saliva and anything else she happens to swallow. I've been emptying the bag about every 2 hours because the bag starts to get heavy and pull on the tape that's holding the extension tube onto her stomach. Not only that but see the little green cap on the bottom of the bag? That stupid thing has popped off twice tonight and spilled bile all over the floor and Raya left a trail behind her until we realized what happened. So yeah, I try not to let it accumulate much because then if it spills there's less mess to clean up. And speaking of the bag, it's not actually made for draining bile out of a stomach. It's a catheter bag for urine. It's the only thing our home health company could come up with that works for us. I actually do like it a lot better than the bag the hospital in Ohio gave us and there's not even any contest between this and the bottle she used to drag around:
So what do we do about this problem that we thought we were past? I emailed the nurse today (several times) and gave her updates. I'm sure she loves getting emails about things like bile and poop. :) I talked to her this afternoon and she said that the doctor thinks (and she agrees) that her system is just reacting to the trauma of having her tube changed and that hopefully over time it will improve. I agree but I still think that there must be something more to it because when she had the GJ tube changed in Ohio, things immediately improved and they chalked it up to better tube placement than she'd had before. That makes me think that this time, we just have worse tube placement than the tube she just got replaced.
The nurse also said that they could/might do a GJ tube contrast study to make sure there's no kinks or anything in the tube but we both agreed that it seems kind of pointless because if the tube was kinked or not in place, the feeds wouldn't be going through. Not to mention that I don't want to go back to Phoenix again this week.
Dr. S wants me to drain & measure the fluid every 4 hours and replace what she's lost with pedialyte added to her formula. At her current rate of feed and going off of what she drained yesterday, that means we're going from being on the pump for 9 hours at night and not at all during the day to 17.5 hours on the pump. Not fun. We were LOVING not even having to take the pump off the IV pole next to her crib and she had gotten used to not having to wear her backpack anymore, so this is a bummer. But the good news is that this time we're managing things at home and not at the hospital like before. As long as we can keep her hydrated we'll be fine and the doctor hasn't even mentioned the "H" word. :) She just wants us to keep monitoring things and updating her, so that's what we'll do. And since Raya's weight gain has tapered recently, maybe the added calories from the pedialyte will help a little.
Good thing this girl is cute!
*11pm update: Raya's total drainage for the day is 430ml, which is just over 14 oz. That's almost half of her total usual daily fluid intake.