Our Teddy Bear's Journey

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

Croup again, and bonus mystery fevers

on October 11, 2015

I realized that I haven’t updated for a while, whoops!

Teddy had a quick hospital stay in August (or maybe early September) with… Croup!  Yes, that winter illness that he gets year round because he’s special that way. 🙂

In keeping with his standard, he went to sleep with no fever, no runny nose, no signs of a virus at all. And he woke up a few hours later in respiratory distress. This time it was pretty scary bad – he would not lay down, his color was terrible, he tried to vomit but couldn’t. He had stridor (wheezing sound when you try to breathe) and retractions around his ribs and up by his neck (skin goes in instead of out when you try to breathe in). He was drooling. By the time I got fully awake, I threw the pulse ox on him while I got some shoes on and his o2 saturation was around 84. That’s pretty bad. Bad.

We drove to the ER and the nurse checked his o2, it was 82, and we skipped the rest of triage and ran back to a room while she paged respiratory therapy and then started treatment without waiting for the respiratory therapist to come. It was pretty bad.

Poor kid. Two or three treatments later, he finally was able to sleep again, but the ER doctor let us know that there was no chance they were letting us go home. He considered letting us stay in the ER, but thought it likely that he’d need another treatment since he still wasn’t doing fantastic.

So we had our first in-town admission. It was interesting. I’m used to every third person we see knowing Teddy on sight, lol. Nobody there knew us. Nobody there knew anything about kidneys. Or kidney transplants. They never got his meds from the pharmacy (I had Randy bring them from home). Phlebotomy didn’t come up on time for his Prograf level (which is a drug trough and must be drawn before the next dose is given, which must be done at 9).  But the kids and Randy could come hang out with us, which was also weird.

They let us go home the next evening.

But that was his 9th time getting croup – 4 times warranting ER trips, and 5 times treating at home with prednisolone (that we have specifically for this purpose) in less than a year. That’s a lot. That’s a lot even for a transplant kid.

So, we get to add ENT to our team. 🙂

Hopefully they’ll have an opinion on what the deal is and why he keeps getting croup and what we can do to stop it. A theory’s been floated by nephrology that it’s not even croup, that it’s something that mimics croup, but I suspect we’d need Dr. House to figure it out, lol. I think if it was structural abnormalities, it would have been noticed during one of the 20 odd times he’s been intubated, but maybe not? Who knows.

In the meantime, Teddy’s had Hand Foot and Mouth disease (remarkably mild – or else misdiagnosed, which is a definite possibility) and now mystery low grade fevers that come and go for the last few weeks. Bleh.

And an added extra bonus: I’m now first aid/CPR/AED certified, so if you collapse and lose consciousness, look me up.

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