Our Teddy Bear's Journey

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

Dec 5-12

on December 12, 2011

After surgery, his numbers improved a little, but not the dramatic improvement they were hoping for. By Tuesday (the 6th), everyone pretty much gave up.

His morning labs didn’t look great that morning, and when the perinatology team did rounds, they didn’t have much to say. The nurse said she had seen the nephrology team in the hallway, so we waited for them to stop by. Like 2 hours. They were all still talking to each other. And as much as I wanted to think I was being big-headed to believe that they were talking about us, I just kind of knew they were taking about us. And that they were talking about us for such a long time probably meant they weren’t saying “hey, things are looking ok.”

Turns out, they WERE talking about us, and no, they didn’t think things looked OK. They thought things looked pretty bad. He is making urine, but the kidneys aren’t actually filtering his blood. Not only were the toxins building up in his blood, but his electrolytes were starting to get all out of whack. This could lead to a whole host of bad things, including poor growth, lack of appetite, etc., in addition to just making him a pretty sick little kid.

His blood needs to be filtered. The bad stuff needs to come out. He needs dialysis.

She did throw us a bone that maybe, given time, his kidney will start working again, but then pretty much made it sound like it’s just as likely that his kidney will turn into a flock of geese and migrate south for the winter.

That night, he had so many tubes, I was not able to hold him, even for feeds. Asshats.

He had surgery Wednesday to install the PD catheter. That surgery went well, and they also installed a broviac line in his chest to do IV stuff and also blood draws. (He was blowing through IV sites about once a day, and he’s apparently very challenging to install an IV in, meaning that they blew out at least one vein with every IV placement attempt.)

Headed to Second Surgery
On his way to his second surgery

Post Surgery
Post Surgery
After Surgery

The next few days, it was on again/off again with whether the broviac line would draw. We’ve finally figured out the trick, though – prop up his shoulders and turn his head.

On Thursday, they also installed a Picc line in his foot. That took about 3 hours. Sigh. They use that to give him bicarbonate (baking soda) to reduce acidosis.

He was on and off gavage feeds, and then he was on no feeds, and then he was on teeny tiny feeds, and then they finally let him go back to all breastmilk, as much as he wanted, on Friday. However, they were still pumping him pretty full of nutrition via IV, so he wasn’t all that hungry. They started backing that down a little over the weekend, and he’s eating better at this point (Monday).

I actually started sleeping in our room at Rossi House with the big kids, wanting to fill them up on mommy time before they had to leave, and Randy spent most of the days and early mornings with Theodore.

PD Catheter
The PD Catheter

Sunday afternoon, Randy and the kids left to go home for the week. I’m settling in for a quiet week hanging out in the NICU, being in the nurses’ way. (And I don’t care at all.) I have his Christmas stocking kit that I’m hoping to work on, and a book that I’m sure I’ll finish before too long. I’ve got knitting. I’ve got some movies. I’ve got rhythm, I’ve got music…

I think that brings us up to date. I might post later on about how crappy I think all of this is and how I seriously don’t get it, God. He’s just a Baby.

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