Our Teddy Bear's Journey

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

Surgery 16

Today went both better than I thought it would and also more or less exactly as I suspected it would.

For being the first time Teddy’s been NPO for any extended length of time since figuring out that the sensation of hunger IS hunger and is fixed by eating food, he did remarkably well. NPO’s always been pretty easy in the past because, though he might have felt hunger, it was a sensation that meant little to him, and certainly didn’t prompt any action on his part. But he made that connection in the last year and I was expecting today to be worse than it was. He had a few meltdowns about being hungry and wanting snacks, but for the most part, he was pretty distractable and easygoing.

The surgery didn’t really seem like a “surgery” to me – I’ve always defined “surgery” as “some level of sedation plus some level of cutting.” Today was a laryngoscopy and bronchioscopy – plan was to just look, and if she found anything easy to fix, she’d fix it. But evidently because it involves the airway, it is medically considered a surgery. The surgeon (same one who did his tonsils) was very very clear on that, and made sure we understood it was a real surgery, not something to be taken lightly.

The hope was that we’d find a cyst or something in there that was an obvious cause of recurrent croup and she’d clip it off and that would be that. There was a possibility of finding any number of awful things in there. But the odds were on finding basically nothing.

And that’s basically what we found.

His airway looks “angry.” If we hadn’t just done a PH probe and found he doesn’t have reflux, she’d say his airway looks like he has severe reflux. (makes me wonder about the PH probe, but she felt it was reliable. I’m going to talk to GI again, though.)

He has subglottic stenosis. That means that his airway is narrowed below his vocal cords. Stage I, which is a nice stage, all things considered. That means “only slightly narrowed.” We need to remember that for any future intubations, but it shouldn’t cause any big problems. Such as recurrent croup.

She actually took a picture of what’s causing his snoring. I told a friend this afternoon that this is the fun part of being a medical mom. Yeah, I have a picture of “a snore.” He has some floppy skin just above his vocal cords that gets sucked into his vocal cords when he’s not too deeply asleep, but she watched it as he got more deeply asleep with the sedation and it stopped. She listened to my story of his snoring (which had gone away after the tonsils but is back) and said we need to keep an eye on it but unless we notice he’s having apnea, just to monitor. (She said it’s not like he’s going to actually sleep with a cpap on, and though she can probably fix it surgically, that’s an option for if it’s really really bad, and not something she’s eager to do.)

I chatted with her for quite some time. I had forgotten how much I like her, even though her clinic runs SO FAR BEHIND that I’m usually irritated as heck by the time I ever talk to her. 🙂  She shared some research with me (which of course always gets you good marks in my book), shared some things she’s planning to actually research herself that were relevant to what we see with Teddy and she hopes to learn more about things like his angry airway in the next several years. She discussed the fact that her resident challenged her on why we were doing this surgery today, and she really had thought it over again this morning on whether to just cancel the whole thing, but enumerated for me why she decided it was worth going ahead. (and suggested she’d had this conversation with herself the day we scheduled it when she saw him on her schedule…which I appreciated that she was so thoughtful about it.)

 

But the remarkable moment of the day…

I took Teddy back to the OR like I always do. The anesthesiologist was almost EAGER to have me go. It wasn’t, “oh, I suppose” but rather a very swift, “Definitely! Here’s an outfit for you.”  When I got back to the room (the ambulatory surgery center has you wait in the pre-op room while your patient is in the OR, and then they also recover in the same room), I told the nurse that he would probably wake up really upset and angry. Because he ALWAYS HAS. Even the relatively minor sedation for the GI scopes. Just pissed. And I like to warn them because sometimes they’re kind of surprised.

I ended up telling like four people this.

And then eventually they brought him back to the room, cool as a cucumber. Completely chill. First stage recovery nurse said he woke up, looked around, rolled over, took some water, and just laid there looking around.

Wow.

If I had to guess I’d say he was doing the “compliant patient” routine he sometimes does when he’s just unable to deal. He submits to whatever, but it’s like he goes somewhere else in his head. It breaks my heart, but if he can make that work for him… hey, whatever. But he stayed pretty calm the whole time. Snuggled next to me in the chair for a while. Didn’t want to leave when it was time to go. 🙂  So maybe he just was calm? Nurse also suggested that the type of anesthesia might make a difference, and if he has future surgeries to be sure to note for them that this one was a much easier recovery.

So… no answers. But as frustrating as no answers is, it is better than definite bad answers. And with this, we’ve not only ruled out the easy/small stuff, but we’ve ruled out a lot of big/scary stuff, too. No answers on the croup, so no ability to predict if it’s going to continue to be a problem or if he’s going to outgrow it… which leaves me feeling like we can’t ever sleep more than a few minutes from a hospital… but at least there’s nothing horrible going on in there.

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