Sleep Study

[alotofyarn]

C had a sleep study last night. His dentist recently mentioned that he had large tonsils. We saw ENT shortly after that to follow up on his tubes falling out, and she agreed that his tonsils were large. He does snore at night, but not generally enough to concern me. At the time, we agreed that a sleep study might be helpful, but not urgent. Last week, however, I was talking to a colleague who is a pediatrician, and he mentioned sweating as a sign of sleep apnea, which C does often. And he mentioned that sleep apnea is associated with right ventricular hypertrophy, which of course concerned me for a kid who only has a right ventricle. I ended up calling ENT back, and they agreed it would be good to do the sleep study. So, he started off great, tolerated all the stickers and wires really well, and fell right asleep with me. Two hours later, they came in and said his sats were dipping into the 70s, even with oxygen on, and they wanted him on CPAP for the rest of the night. He did OK with it, and did really well while it was on, but he did wake up several times scared, so we turned it off and then back on a few times. At this point we'll wait to see what the sleep study physician says, then ENT, and possibly cardiology. His baseline sats are in the mid 80s, so the sat drops alone don't concern me (his target is above 75), but I don't know if he was having actual apnea episodes or just hypoxic episodes. If it is apnea, we'll likely have a choice of CPAP or T&A surgery, and we'll likely go with surgery, even though that's more complicated for him. I can't imagine lifetime CPAP.

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[Phoebe]

You’re guy is a trooper! I hope they figure something out.


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[OrionGrad]

I second [MENTION=789]Phoebe[/MENTION], your little guy is a trooper. And so are you! A sleep study doesn’t sound like fun for anyone. Keep us posted on what option you go with and how everything goes.


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[civilspouse]

Agreed! What a trooper. Hope you guys figure out a solution soon.


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[Howfunitis]

Agreed, such a trooper!!! Hope everything works out. I can’t imagine having to do cpap, poor little guy


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[SoonerTexan]

You guys continue to amaze me, especially having a kid the same age.

[alison]

He is darling. What a strong little guy you’ve got there.

[SoonerTexan]

His dentist recently mentioned that he had large tonsils.

So we just got back from the dentist and she mentioned that my daughter has very large tonsils and asked if she had other signs (snoring, tough time sleeping at night, tired during the day). I wonder if some new research came out or something? She said it was something they were starting to note now. We don't have any concerns, but just thought it was interesting!

[alotofyarn]

So we just got back from the dentist and she mentioned that my daughter has very large tonsils and asked if she had other signs (snoring, tough time sleeping at night, tired during the day). I wonder if some new research came out or something? She said it was something they were starting to note now. We don't have any concerns, but just thought it was interesting!

Maybe? I have no idea!

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[alotofyarn]

ENT called today. She said he does have signs of obstructive apnea, but she can't make any recommendations until she talks to his cardiologist. His lowest sat recorded was 65, and average for the night was 82.

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[alotofyarn]

Update - talked to ENT on Friday, and he has moderate obstructive apnea (AHI=10, and >10 would be severe). We have a follow-up appt in clinic to discuss options next Friday, but I assume surgery is the best route.

[SoonerTexan]

Well bummer for another surgery, but yay for the dentist in calling it out!

[alotofyarn]

Plan is to try 3-4 weeks of Singulair/Flonase and see if that helps. Otherwise, we'll schedule surgery.

[alotofyarn]

Not much improvement with meds, so we're scheduling surgery. Right now it looks like it will be early January. There was a December date open, but I'd have to cancel a work trip and J has a lot going on at work, so January seems better. Right now I'm fighting to get cardiac anesthesia for him, because the anesthesia NP told me that they considered post-Glenn (his second surgery) palliated, and he didn't need cardiac. I disagree, and I think his cardiologist does too, so we'll see if I can win this one.

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[alotofyarn]

Surgery is December 17 - the schedulers were looking at the wrong schedule. This gives us 2 days before E starts winter break, when I'd be home anyway, so it shouldn't be a big deal to also have C home. J requested the week off too.

And, for fun - he currently has an ear infection, so as long as he's under and ENT is in there, she's going to put tubes back into his ears.

Cardiology said he doesn't need cardiac anesthesia. It makes me a little bit nervous, but regular pedi anesthesia seems to actually have a lot of experience treating single ventricle kids, so I'm not going to fight it.