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There is such a thing as too hot to swim...

I made a comment to a family member the other day about it being too hot to swim that day. "What do you mean too hot to swim?!? That's an oxymoron! When it's hot, you're SUPPOSED to swim to cool off!" That day, however, it happened to be 113 degrees outside with no shade at the pool and me vs. 4 kids who aren't good swimmers. The whole idea of going swimming by myself with 4 kids just seemed exhausting and then when you factor in the 113 degrees, the baby that needs extra pedialyte on a constant basis to keep from getting dehydrated, a swimming pool that's probably 95 degrees, and how quickly even "regular" kids can get dehydrated in that kind of heat, swimming sounded more dangerous than it was worth. So yes, it can be too hot to swim.
Much like that situation, it is also possible for progress to be frustrating. For the last 5 weeks since Raya got her GJ tube changed, she's had 400-500ml/day of bile coming out of her stomach. If I left the tube clamped so that it wasn't relieving the pressure & fluid out of her stomach for more than a couple hours at a time, she got really fussy and uncomfortable and we were afraid she would start vomiting again, so we drained her continously and gave her a few short breaks throughout the day. In other words, we had to drain her for 18-20 hours a day in order to keep her comfortable. It's been gross and messy and people stare at her/it and we're constantly paranoid about it getting caught on something and spilling (perhaps because it spilled large amounts 4 times last week in her bed). It was necessary though and we felt like the benefits outweighed the annoyances.
Then the weekend came. I was getting really frustrated with the spilling incidents because 4 times, the bag either came unplugged or the extension tube broke and the entire bag spilled. Every time it happened, she was in bed and woke up screaming and I'd have to get her out and wash her off so the bile didn't irritate her skin, and then clean up the mess out of her bed & the floor. One night, I decided to wait until 5am to plug the drain bag in. It would have been great except that she must have stepped on the bag and unplugged it so bile was running out of the unclamped tube and spilling out of the bag again.
Something similar happened at naptime that day so on Friday night, I decided to leave her clamped the whole night and see what would happen. I fully expected vomiting Saturday morning but she was fine. She woke up around 7 with a poopy diaper and was fussy, so Donny plugged the drainage bag in and I left it on her for an hour. The rest of the day, I did the opposite of what we've been doing. I left her clamped for 2-3 hours at a time and then just drained her for 15-30 minutes and clamped the tube again. By the end of the night, she had only been drained for 6 hours and 45 minutes as opposed to the usual 20 hours. She had drained 290ml of fluid, which was still high but was lower than usual. Yesterday was pretty much the same story. I drained her for a total of 7 hours and she lost 250ml of fluid. Last night, she was clamped from 7pm until 7am this morning and was totally fine. She was a little fidgity and irritable with the other kids this morning but there was no puking. 
In addition to the sudden ability to be clamped for the majority of the day in spite of the 400-500ml of excess bile that is in her stomach, she has also suddenly gone from wanting nothing to do with food to begging for bites of EVERYTHING, letting me put spoons/forks with food on them in her mouth, wanting drinks of water every time she sees a water bottle or drinking fountain, and putting every single crumb she sees on the floor in her mouth. (she still doesn't swallow much of anything) All of it is great progress and very exciting but it is also SO frustrating. After 18 months of miserable symptoms with no real answers, she is suddenly and mysteriously "over it" and she's fine and suddenly WANTS to eat, and we still have no explanation for anything.
I know I'm probably sounding whiny & ungrateful again. I am very grateful for the progress, I just don't understand how she can suddenly and with no apparent reason be fine. It CAN be too hot to swim, and progress CAN be frustrating.

Comments

  1. And within a year (with luck sooner), she'll be swallowing and eating some and you'll have to mess with the port and draining and all that less and less. You'll be complaining about how she's gone from not eating to eating everything to only wanting to eat macaroni and cheese with hot dogs, at every meal and what disgusting diapers that makes. :)
    I don't think you're whining or ungrateful. (And if anyone gets to whine, I think you deserve it.) Kids are baffling. I'd feel the same frustration if it was my kid who was going through this. I am frustrated for you, but loving hearing about the progress!

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