Our Teddy Bear's Journey

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

The Plan

on September 3, 2012

I feel like I’m starting to be a tease with my proclamations that Teddy Is Going To Start Dialysis. How many times have I said that? At least 6 times while he was in the NICU, and I think an additional 3 or 4 hospital admissions, plus one or two “if labs aren’t better this week, we’ll probably admit and start dialysis” warnings.

This time, I am pretty certain, is The Time. Though last time, I said there was no getting out of it, and Teddy found a way out of it, lol. (as you might recall, he got C-Diff the evening before his surgery and it had to be cancelled.) I’m hoping that he doesn’t take this as a challenge and see what new and different ways he can devise to get out of it. :0)  Not that I’m eager…

So. Here is The Plan.

Wednesday morning, I will drive over to Iowa City and we have our follow-up with Otolaryngology. Hard to believe it’s been 3 weeks since his tubes. Need to ask them why he still digs at his ears all the time.

Then we’ll (hopefully) check in to our room at Ronald McDonald, and head back over to the hospital to be admitted. Start an IV Wednesday night. Then he’ll have surgery Thursday morning to replace his catheter. For some reason, I’m nervous about this surgery. It will be #9.

Thursday afternoon, the plan is to start some low-volume manual passes of dialysis, then repeat this on Friday. Hopefully we will be discharged Friday, and I’ll come home and spend the weekend with my big kids at home. Otherwise, Randy will bring them to me in IC.

Monday morning, Randy and I will drop the kids off at Aunt Kelly’s and start dialysis training with Jen in Iowa City, outpatient. We’ll stay at Ronald McDonald, learn stuff during the day, and have free time at night. I believe we will be able to come back for the weekend, and then return again the next week for more training. I’m a little hazy on whether Teddy will be on dialysis over the weekend or not. At some point, we’re going to have to get all of the supplies here and set up and ready to go. I’ve heard that the cycler can have a tendency to have a lot of alarms overnight, so I’m trying to enjoy my sleep while I can – though pumping 2-3 times overnight kind of wrecks that for me anyway, lol.

Then, Teddy will be On Dialysis.

 

Like I said, I’m not eager, but I will admit, that this nonworking catheter thing actually has me nervous. Particularly since this last week, with his sodium being low all of a sudden. I’ve been really really paranoid about whether or not he looks puffy. 🙂

 

This will be the longest the kids have ever been away from us. When Teddy was in the NICU, they lasted 2 nights at Aunt Kelly’s house and then needed to come back to IC to be with us. We’ve tried to figure out a way to keep them in IC with us, but since we don’t have a nanny and I don’t know anyone who can/will drop their lives and come live with us in Iowa City for 2 weeks, this is the best we can do.

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