Our Teddy Bear's Journey

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

Just like Old Times. Sort of.

We saw Otolaryngology yesterday. Yes she does want to scope him. Which I knew she would and I’m not happy but I’m not unhappy. It’s one of those “I don’t want to but it’s probably a good idea” things. Those are a bit harder for me than the “do this or he’ll die” surgeries, though, that’s for sure.

So because of his heart defect, he has to have an in person appointment with anesthesia. It’ll take 45 minutes, they said. I have no idea what they’re going to do. We never had to do it before because we didn’t know about his heart. Harumph.

So, on the schedule between now and April, we have:

  • pre op
  • this procedure
  • post op followup
  • derm appointment
  • transplant clinic
  • Echo and cardiology annual appointment

Yep, 6 trips in  3 months. It’s almost like old times. But it’s still not *every* week, like we did for about 18 months, so it’s hard to complain too much.

But it’s not like old times – before his transplant, he could not be NPO safely. He had to be admitted for an IV if he had to be NPO. This procedure will hopefully be outpatient. 🙂

So they consider it an “operation.” It’s more anesthesia than he gets for GI scopes, more than you get for ear tubes, but not as much as he got for any of the big surgeries. She’ll basically stick a camera down his windpipe and into his bronchial tubes and see what there is to see. If there’s anything obviously wrong that can be fixed easily, she’ll fix it. If there’s anything obviously wrong that can’t be fixed easily, we’ll schedule another OR date and take care of it. Chances are good she’ll find nothing, and I think I offended her when I said that that was what I was expecting… but it’s just that I’m used to doing lots of invasive testing and STILL HAVING NO ANSWERS.

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Well, it’s not reflux

Teddy was admitted for 24 hours right after Christmas for his pH study. They put a fancy tube down his nose all the way to the top of his stomach and it measured if anything was coming back up, and if anything was, whether it was acid.

He was scheduled for sedation for this, despite the fact that the clinic nurse and I had discussed and agreed when it was scheduled that he didn’t need it. So I refused. They balked. They weren’t sure they’d ever placed a pH probe on a 4 year old without sedation. Would the doctor even agree to this? I held fast, and they eventually relented. It was fine, even though the resident who actually placed the probe had so obviously never done it before. He was fine.

It was a super boring stay, but since no doctors really needed to see us for any reason, we didn’t have to hang around our room much. There was a big snow and ice storm so there were hardly any clinic patients walking around, so we ran up and down the deserted hallways. Derm had a billion cancellations so they agreed to see us while we were there about Teddy’s weird skin nonsense. (Folliculitis infected with staph or strep.)

 

So we got a call a week or so later. It’s not reflux. He has no reflux. At all.

So… the vomiting, the coughing, the gagging, the increase in coughing and gagging in the mornings, the stridor and the croup…  well, we ruled out the easy and obvious cause. We see ENT again on Thursday to discuss next steps, but I’m 99% certain she’s going to recommend scoping his trachea and I don’t wanna. I mean, we’ll do it because that’s the next step, and the only step really, but I don’t wanna.

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