Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

First night with the cycler

on October 19, 2012

(Prepare yourself for some masterful Tech-y Dialysis Word Useage.)

2012-10-19 16.39.20

We had used Teddy’s cycler Monday, Tuesday, and Wednesday in the clinic in Iowa City with no problems at all (which was a nice change). He predictably has ZERO for his first drain (translation: when we put dialysis fluid in before unhooking him in the morning, his body absorbs it all during the day, and there’s nothing left in there to drain out in the evening), which sets off a string of alarms, but since they’re at the beginning of the evening and I can just bypass them, it’s not a huge deal. Otherwise, he filled and drained like a champ. Which, again, was nice.

Fast forward to Thursday night. I get him hooked up with no problems. Initial drain, alarm, alarm, alarm. Three alarms and then we bypass. His drain was 0. Fine. Moving on. The machine fills, then it dwells (the fluid sits in his insides and does its stuff), then it drains. He had just nodded off when the machine started to alarm for the first drain of the night. Low drain volume. So I do what I’m supposed to do – move him around, jiggle him, shake him, then I end up picking him up because I woke him up doing all of this. Alarm, alarm. I pushed some buttons and got it to try to continue to drain, and we eventually got enough out for the machine to go on.

Not draining all that was put in is not uncommon for him with the first fill, so I decide not to worry about it and I go to sleep. And I’m woken up about 40 minutes later to the alarm again.

Same deal. I eventually get enough out by essentially waking him back up and shaking the bejesus out of him.

And just as I nod off again…. beep beep beep beep beep. This time, no amount of shaking is doing the trick, and the machine had a NEW alarm for us. Low UF. (ultrafiltration – it’s the fancy pants word for PD Doing What It’s Supposed To Do.) (He is either absorbing a lot of fluid – or it’s simply not draining out like it should. Evidently, when you’ve been at this for a while, you might have a sense for which one it is, but I of course am clueless.) I have no idea how to go about fixing this, so I give up and call Jen, our dialysis nurse. At something like 11:30 or midnight.

I get him settled back down and to sleep while she walks me through what to do to get it to let us try one more cycle. This time, he acts uncomfortable with the fill. (so it could be that he’s just not draining and now his belly’s pretty full and uncomfortable.)

And 35 minutes later, Teddy is frantic with discomfort and there’s another nonstop alarm about Low UF. Another phone call to Jen. And she decides to have us just call it a night, unhook him, tear down the machine, and she’ll talk to the doctor in the morning.

They decide, rather than change his dialysis prescription (volume of fills, length of dwells, number of cycles), we’ll change the machine so it doesn’t panic if he gets a negative UF and see how tonight goes. If tonight goes just as poorly, then guess what?

Then my little Glow In The Dark X-Man Dude gets another Xray. To check his catheter.

I am declaring here and now that if his catheter has managed to get into trouble even despite being sewn to his bladder I am honestly going to have some sort of breakdown.

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One response to “First night with the cycler

  1. thejaxmansjourney says:

    Hope all goes well! Nothing seems easy for Teddy poor guy.

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