Our Teddy Bear's Journey

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

So, can you believe it? We’re in Iowa City again.

on November 4, 2012

Yeah.

2012-11-04 19.29.05

Last weekend (29th), Teddy started getting really stinky C-Diff smelling diarrhea again. I called on Monday, took in a sample on Tuesday (earliest I could get anything at all solid, that’s how bad it was), was told it was negative, then the fax that UIHC received said positive. Dialysis didn’t work at all on Monday night (or was it Tuesday?). We went in for labs on Wednesday and his sodium was too low and a few other things were off, so we did lots of pedialyte on Thursday and went back for more labs and an Xray on Friday. Learned that the phlebotomy and radiology labs at our peds clinic complex are completely worthless. Friday’s labs came back really really late and were bad, so we were told to come in Saturday morning. Dehydration.

(and he never ever appeared dehydrated. he was drooly, he cried tears, his mouth was moist, etc.)

So here we are. We thought we were just going to get some IV fluids and get the electrolytes straightened out and go home.

(One of the nephrologists suggested there’s a chance his kidney is just losing its ability to help regulate sodium, which they expected to happen obviously at some point. Who knows. We knew his kidney would eventually completely give up… I guess I didn’t really ever stop to think about what exactly that would look like.)

Now, today, he’s been on IV fluids for a day now and should be well hydrated. Decided to try doing dialysis again for the first time in several days. And it didn’t work. We got fluid in, but not out. Jen (dialysis nurse) came in with the ultrabag to try to flush it out if it was just fibrin in there… nope.

So, hey, we’re keeping up Teddy’s surgery averages at 1 per month of life, and he’s headed in for #11 tomorrow.

That picture above? That’s Teddy this evening. He honestly looks like he’s just given up. He’s tired but not sleepy. He doesn’t feel great. He’s got a big belly full of fluid. He has rolled over and given up. Which is what I want to do.

And I like to think that I’ve been pretty flexible, go-with-the-flow with most of this stuff. But this is ridiculous. It’s the other surgeon tomorrow, so I’m going to give him a chance, but I am very literally at the point of seeking out other options if this happens again. I’m not doing another catheter surgery here. I would rather try my luck at Amplatz in Minneapolis or the hospital in KC. I have no idea how that would work, with using a surgeon that far away but still wanting to keep his nephrology care here, but I’m sure we could figure it out.

Posted this on Facebook: I really want them to walk in and say, “hey, we ran some new tests, and we totally can’t explain it, but his tiny undeveloped right kidney spontaneously grew, so who cares that the left kidney is slowly winking out, he’s got an amazing right one that’s going to take over and everything will go back to normal. Yay! Enjoy your suddenly much easier, more carefree life and don’t forget to put us on your Christmas card list.”

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3 responses to “So, can you believe it? We’re in Iowa City again.

  1. Laura says:

    Mama, if you do end up in KC and need anything, please drop me an email. We’re in Topeka, an hour away, but we wouldn’t hesitate to help in any way we could, plus we know many people in the KC area. Praying for you guys!

  2. {{Hugs and Prayers}} Jairden’s surgery at Children’s Hospital in MN went very well and they have an amazing PICU staff.

  3. thejaxmansjourney says:

    I am SO sorry things are going so badly for Teddy. I pray for him everyday. I hope things get better/easier soon. He has been through enough!

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