Our Teddy Bear's Journey

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

Yikes, haven’t updated for a while

on May 1, 2014

So remember when I said No More Iowa City for TWO MONTHS!?!?!

Well.

So Teddy got a GI bug (as we all did) and ended up admitted for a few days about 3 weeks ago just to get rehydrated. His GI system can’t handle a whole lot of liquids, so the more I tried to rehydrate him at home, the more he just had diarrhea and I honestly believe I was making the problem worse. The ER doctor here in town (in our ONLY bad ER experience here) did labs only after I insisted (labs were the ONLY reason we went to the ER, after he’d gone over a day without peeing at all) and then wanted to send us home just working on oral hydration. Which was fine. He sent us home, I called his nephrologist myself, she got his labs, and got him a room on the peds floor at UI. It was fine. Just a few days.

Then we had to go back for an appointment with neurology. I haven’t talked much about it, but evidently his liver biopsies have both showed some concerning things that could point to a particular seizure disorder that doesn’t show outward symptoms this young, so the more I asked questions about Teddy’s breath holding spells, the more everyone started getting pretty concerned. Not necessarily concerned… more like “hey, it’s probably nothing, but I’d sleep better at night if I had to talk to neurology.” So we talked to Neurology. They had no concerns about him at this time, they feel confident it’s just breath holding spells. Everyone feels much much better now. 🙂

Yesterday, Teddy had his hearing checked. I can’t remember who told us we should take him back for a hearing check after the tubes came out, but someone did and so I took him and it was PERFECT. I might take him back for that every few months, just because having tests come out PERFECT is so super fun and not something that happens all that often.

His labs have been a little all over the place, but not too terribly awful. His prograf (drug) level has been REALLY all over the place, which is bad. We’re trying to figure that one out.

That’s about it. We go back to Iowa City at the end of this month to see Nephrology, GI, and HOPEFULLY Genetics will have some news for us by then, as well.

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