Our Teddy Bear's Journey

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

on May 9, 2013

Yesterday was a difficult day for many, many reasons. Big news first: Teddy’s transplant has been canceled.

We got to the hospital and did labs (20 mL of blood from the artery in his wrist, which was evidently extremely painful and took two tries) and put in an IV (first try) and then turned his hand into a Club. I didn’t take a picture, but I wish I had. We had his hand and wrist taped to a board, then more tape over it, taping his fingers down, and then we had to put a dome over the tubing so he didn’t chew on it, and then burn net over that, and then a immobilization cuff over that so he wouldn’t chew on the burn net. He hated it.
I watched my boy go from being pretty happy (though grumpy because he really wanted to crawl around) to being afraid of everyone, clinging desperately to mommy, and whimpering and shaking if anyone approached him. He remained like this until we left. It was heartbreaking.
He had an Xray of his chest. Not sure why.
After initially hearing that his labs looked great, we then got the news that his liver function tests came back not good. The enzymes were high – double what they were in December, when they were already high. The transplant nephrologist was “leery” of continuing, but would wait for GI to weigh in.
The surgeon (who looks more “surgeon-y” in person than she does on the UIHC website, and seems very confident and just a short chat with her under less than ideal circumstances was extremely reassuring) stopped by and answered some questions about the surgery itself (5-8 hours, will come back with some sort of central access, will start his surgery by 8, about the same time as Tiff’s surgery) and said that she was really not in favor of continuing until we nailed down the cause of the high enzymes, but would wait for GI.
And then about an hour later, the surgeon, nephrology, and not sure who else (NOT GI) got together and decided that, if it were their kid, they wouldn’t want to proceed, and even without hearing from GI, they were uncomfortable enough with the situation to go ahead and cancel. They called Tiff right away.
The problem isn’t the enzymes themselves, but that we don’t know what’s causing them to be elevated. And based on questioning of everyone, I really do think that they just don’t know. It could be a reaction to a medication, it could be something viral, it could be something more serious. We just don’t know.
We also learned that his PTH (parathyroid hormone) is higher again – it’s been climbing. Slowly at first, but it’s been rapidly getting worse lately. We keep increasing his calcitriol (it’s an activated form of Vit D, and the relationship among Vit D, PTH, calcium, phosphorous, and bone health is complex, but high PTH means bad bones) and it is not working like it used to. So there’s that to worry about, too.
GI did eventually stop by, woke him up from his nap (which was a challenge to get him to sleep) and started whacking at his belly. Seriously, thump thump thump. And then they were seemingly unsure what to do because he wouldn’t stop crying. Um… really? Maybe if I held him on my lap, he’d be calmer. No. No, sorry. Is there a toy? A game on the iPod? No, there is nothing that’s going to keep him from crying when he a) got woken up b) by a stranger c) so you could hit his stomach d) when he’s already experiencing a lot of anxiety.
So, after yet more labs, we untaped Teddy’s little fingers, took out his IV, put his clothes back on, and went home. Teddy and I drove back to Des Moines and Randy and the big kids stayed in the hotel in Iowa City that was already paid for so they could swim and have fun after a long day. (Daddy didn’t want to bring their backpacks in from the car, which is an ongoing issue where I thoughtfully pack backpacks with fun activities and then whoever is in charge of the kids doesn’t bring the backpacks along so they end up bored and whiney.)
We’ll go back to Iowa City on Monday for tests, an ultrasound, and appointments with GI, Nephrology, and Infectuous Disease, maybe others. Hopefully we’ll get some answers soon.
In the meantime, we go back to worrying about Teddy’s kidney and whether it’ll hold up until we can get this liver stuff under control and get the transplant rescheduled.

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One response to “

  1. I am so sorry. I don’t understand drs who behave the way GI did.

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