The old dialysis machine failed The Bubble Valve Test and was sent to the happy hunting ground. The new machine worked fine for the first two days, and then it refused to acknowledge that we had a bag on the warmer. Then it couldn't find the second bag and insisted that we didn't have enought fluid to finish treatment.
Tech support loves us. (Thanks, Maria and April! You guys are great, really LOL.) So....we learned a lot more about how to make these machines talk to us. Who knew that there was an entire touch keypad hiding in there? Despite the fact that we (okay, I) actually threatened to shoot the machine after 2 hours of fiddling with it, we (okay, hubby) got the scale reset. Seriously, the scale was off tare by 20 grams. We are playing with 5000 cc bags, which, because they come with extra fluid in them anyway, weigh about 5100 grams. That's a very low tolerance for error, which I suppose I should be grateful for, since it helps protect my child.
But gratitude is hard to scrape up when it's a school night. Set up should take 15 minutes, and I allow half an hour. So from 8:30 until nearly 11:30, we were in her bedroom, discussing cartridge fit, scale balance, pulling IV poles in and out of closets, ripping open boxes and bags and throwing away yet more opened but unusables supplies. And her school only just reopened after the flooding. And she has two doctors appointments this week, and has to take a day off next week to go to the tertiary center for additional tests. And since then (two more nights), the new machine has been setting off alarms during the fill cycle - like it's too weak to push fluid in, as well as causing the usual pain with the drain cycle.
They say that uremia affects school performance, and that dialysis will improve her ability to concentrate and learn. Right now all she is learning is how to survive on six hours of interrupted sleep. And how to make do with only four days of classes instead of five. And probably some cuss words that mom and dad might not otherwise say in her presence.
Her best friend's mom asked her how her night was. She said, "Oh, you know, the usual." Like it was no big deal, the pain that wakes you up every two or three hours. Like it's no problem, trying to sleep while your parents take turns quietly crying in frustration. Like having a ginormous air mattress taking up all the available floor space in your new room is just an alternative decoration scheme. Like never being able to attend or have a sleepover again is perfectly okay.
Dear God, give her her life back. Please.
DeeDee
*hugs*
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