Our Teddy Bear's Journey

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

what’s going on

on July 26, 2013

We’re mostly hanging out. He usually has good mornings – playful, does some sitting. Then he takes a long nap which is interrupted 100 times by the entire hospital staff coming in to bug him, one at a time, coupled with the world’s LOUDEST doors. (note to UICH construction crews: quieter doors in the new hospital, please.) Sometimes he has a playful period in the late afternoon or evening, or sometimes, he just kind of naps and lays calmly until bedtime. He does a LOT of just laying and chatting or laying and looking at books. This is NOT Teddy. I don’t know who this mellow child is, but he’s not my child. I like him a lot – but Teddy doesn’t have many mellow periods. 🙂

He’s had 5 mL of breastmilk now and seemed to do good, so we’re going to get all crazy and move to 5 mL of breastmilk every SIX hours (instead of every 8 hours, how we were doing the pedialyte).

They’re working on his tacro level – adjusting the amount of prograf they give him in order to produce the desired level of the drug in his system – it’s somewhat of a trial and error process to find out how much he needs.

We’re talking about trying to take him completely off the basal (continuous) drip of his pain meds and move him to just the button and see how that works. We can always turn it back on if we need to.

Making progress finally. I know he was making progress all along, but I feel like we’re finally seeing some actual progress. 🙂

His incision is a horror show. The doctors are not worried, but from his belly button down, it’s just NASTY.  Belly button to top of diaper is very weepy. Top of diaper to end of incision (probably 4 inches, and that’s with the diaper folded down as far as we can fold it while still having it serve its purpose) has separated about 1/3 an inch in places, less in others. And it’s healing, but you know how nasty stuff can look while it’s healing. We’re keeping it moist with saline-saturated gauze. It’s just… ugh. icky. To be clear – NOBODY who is a trained health professional has seemed concerned. They’ve all said it looks OK. They’ve said the scar will be pretty gnarly there, but nobody’s looked at it said there was a single thing wrong with it. But to me, the mom, who is not a trained health professional, it’s pretty icky.

When you read that, please keep in mind that I watch surgery on TV for fun. It takes a lot to ick me out. This is icky.

 

 

 

 

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