Our Teddy Bear's Journey

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

Update

on May 12, 2012

Well, Wednesday was supposed to be an early/over with clinic appointment, and then a long four hours of NPO (no food) for Teddy before his sedated hearing test.

It started with the Clinic (we were at Peds Speciality instead of just going to the dialysis unit) not knowing what to do with us. Sent us to labs at Phlebotomy, but phlebotomy doesn’t draw from ports, the nurses do. Then they kept insisting we had an appt with Peds Surgery. We did not. “To change his button!” “um, did that last week.” “well, we’ll check with Josh.” “Ok, you do that. He’ll tell you we did it LAST WEEK!!” argh. No, I didn’t say that all snotty like it reads. It’s not their fault, so I just said Alright.

Then his port wouldn’t draw. Sigh. After trying for a while, we did TPA for a half hour (it’s a clot buster) and then it worked ok, but still not great. Then labs took FOREVER to get back. Like, we finally got them drawn at 11, and they were not back yet when I had to get over to Otolaryngology at 1.

We also did a dressing change – his site has had this crusty brown stuff, and I wanted our dialysis nurse to look at it. It’s evidently OK, though it looks like he might have some sort of skin-level infection going on, since his Gtube site is pretty red now, too.

Checked in at Oto. The first thing they do before starting the sedation is a physical check of the ear canal. Clear out any wax, make sure there’s no fluid. As it turns out, despite my best efforts and the efforts of our Chiro to the contrary, Teddy has some fluid in his left ear. They don’t like to do the test if a baby has fluid, because if they’re going to go to the trouble/risk of sedating them, they want to make sure to get the best results possible, instead of getting results and then having to go around saying “well, it’s hard to tell if that’s just from the fluid….”

So, the resident was pretty sure there was fluid, but he called in the audiologist to double check. Yes, fluid. Also, they pulled out approx 3 lbs of earwax.

Then they all stood around talking to me and I completely interrupted and said, “so, to cut to the chase. We’re not doing the test today because of the fluid?” yes. OK, then HOLD ON while I get him some FOOD for crying out loud.

They seemed to want to talk me to death about why we weren’t doing the test, but I get it.

So we rescheduled for July (the first available – yikes). They said if he still has fluid at that appt, then they’ll want to talk about tubes. Oy. I’m less than enthusiastic about this option.

Then labs finally came back and looked good. Good enough that Dr. Jetton is having Teddy go to our local ped on Monday for labs and then maybe not have to go to Iowa City next week at all!

Also? Genna has Chicken Pox. Suddenly realized this Friday afternoon. Nephrologists are in a tizzy over that, after talking with Infectious Diseases (aka OverReaction Central), who wants to treat Teddy even if he remains asymptomatic. However, from what I’ve read, he’s highly unlikely to catch it from her, since he still has his immunity that he got from me. I think we’re OK, but if he does get it, they’ll definitely want to treat with an antiviral, which is on the list of drugs you should never ever take if you are trying to avoid dialysis. Stinky.

So… lots of prayers that he doesn’t get the chicken pox!!

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One response to “Update

  1. Steve parker says:

    Yes let’s pray that he does not.

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