Our Teddy Bear's Journey

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

Update

on November 6, 2012

Teddy’s surgery last night didn’t go very well. I’m not feeling super great about things right now.

We’re back to more questions than answers. Back to asking God what the hell He’s thinking. (I’ve been watching The Office and I keep hearing Stanley’s “Have you lost your damn mind?”)

Teddy’s intestines were inflamed and matted around his catheter. They had to take the catheter out, and the surgeon was reluctant to replace it at all. His peritoneum is inflamed, his intestines are inflamed, he is full of adhesions. He called nephrology during the surgery, and nephrology was adamant that he put in a new catheter. He said basically that there’s no place left in his little belly for a catheter. He found a spot to put it, something about close to the skin on the right side where there was a small pocket, but he didn’t hold out much hope it would work, and in his opinion, peritoneal dialysis is no longer an option for Teddy.

Nephrology feels there’s at least a chance it might work, so we’re going to give it a try and see what happens. We’ve done a few passes with not great results, but there’s still a chance. Whether it is doing to work well enough and whether it’s going to actually WORK (as in, remove toxins) is still unknown. Neph also said that some kids’ bodies just don’t like the foreign material in them and their peritoneum gets rigid and unusable. sigh. His body certainly hasn’t liked ANY of the foreign material we’ve ever put in there.
Hemodialysis is clearly an option, but not a great one for a number of reasons (driving to IC three days a week for 3-4 hours of treatment is among those reasons, HD being hard on little bodies is another). The whole team would like to avoid it if at all possible. So if the catheter doesn’t work, I think the first plan B is to try diet/meds and see if we can stabilize him and keep him growing and stable that way. I got the impression this would NOT be what we were doing before, but would look at least somewhat different. And they’re possibly going to be talking to transplant about how quickly we can get that process going (if the catheter doesn’t work). Sigh.
And today, his poop is a very strange dark color and mucousy, so they’re going to test it for blood, so that’s just something else to worry about.
Not to say I told you so or anything, but does anyone remember who here didn’t want to start PD because of the concern about downsides? Oh, no, everyone says, it’ll be totally fine! He’ll grow! He’ll be more stable! You’ll spend less time in Iowa City.
Sigh. No of course nobody could have predicted any of this…
And Miss Genn is so very stressed out. She takes each hospitalization a bit harder than the previous one. I worry that at some point, we’re going to break her for good. Also? She’s growing up and I’m missing it. She can write! She knows her alphabet! She’s experienced whole months of her life that I’ve missed. (And Wally, too, but you don’t change as fast when you’re 8 as you do when you’re 3 and 4.)
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One response to “Update

  1. thejaxmansjourney says:

    Prayers for Teddy and you all! This really sucks and I’m sorry!

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