Our Teddy Bear's Journey

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

Croup Croup Croup Croup Croup

Well, we’re continuing to chip away (or at least TRYING to chip away) at Teddy’s “other” issues. Persistent diarrhea and vomiting have been back-burnered for the time being. 

Next up: croup. Teddy gets croup ridiculously frequently and it’s usually serious enough to require an ER trip – retractions, low o2, inability to lay down… all the symptoms they say “if your kid has one or more of these with croup, go to the ER.” So far, we’ve nailed down only the fact that this shouldn’t be happening. 🙂

Last month, we saw ENT for their thoughts. His trachea is slightly small for his age (or was at the time of his last surgery 2 years ago) but not overly small. Not small enough to be causing this.

ENT thinks it could be 1 of 3 things:
– damage from intubation (though no difficulty has ever been noted with intubating him – but he was last intubated under her supervision so there may be a hint of bias there)
– something growing in there (cyst or nodule)
– damage from reflux

She wanted to scope his trachea but I said, hey let’s talk to GI and pursue the reflux thing first, since that’s easiest and I’m in favor of easy.

Today we saw GI. GI… sort of listened to me, but I think had decided to do a PH Probe even before she walked in, which is fine since that’s basically what I wanted to do anyway, but I guess I thought we’d talk about it a little first. She seemed to think it was significant that we took him off the PPI but he’s had croup both on and off the PPI, and coughing both on and off, and vomiting both on and off. The PPI has never seemed to make a bit of difference, even on a dose 3x as much as you’d typically take. Either it’s not reflux, or the PPI isn’t the right drug for him.

So we’re going to do a Ph Probe, which means a day inpatient. That’ll tell us if he’s still refluxing or not and then we can go from there.

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