A Lot Of To-Do For Nothing

When Micah had his sleep study done, I was told we'd have the results in two weeks time. So at the two week mark, I looked at the paper they gave me for the phone number to call, and then realized that I was to make an appointment at the ENT office after two weeks for the results.

Oops.

So I made an appointment with the ENT, waited another two weeks, and finally got the results we've been waiting to hear. Micah has sleep apnea. But of course we knew that. That's why we scheduled this to begin with. But the good news is that, on a scale of 1 to 15, Micah ranks 9. He's in the moderate range, and it's not a huge concern.

However.  Because there's always a however with this kid, isn't there?

Micah is one of very few patients the doctor has ever seen that retains a bit too much carbon dioxide while sleeping. This means that he does not exhale hard enough to expel it all, and a build up occurs over the course of the night. Because I question everything, I asked what the side effects of this are. It's hard on his brain and heart, is what I was told. And what, then, is there to do about this?

Option 1 that the doctor is keen on mentioning every time I talk to him is a tongue base reduction surgery. This will allow him a larger air passage while he exhales through his mouth (he's a mouth breather), and seems like it would ultimately be a good solution, except others in the medical profession (including our local ENT) have said that it's only a 50/50 chance of actually helping and it's incredibly painful. We all know that doctors find it amusing to lie about pain levels, so hearing that it's incredibly painful means it's not even an option in my book when combined with a just a 50/50 chance of even working.

Option 2 is a CPAP machine. I'm telling you now that Micah won't wear that to bed even one night, much less every night. Our local ENT, whom I consulted with before we got the results back on the sleep study, said that if he wouldn't tolerate a CPAP, simply piping oxygen into the room might be a good solution. I'm really glad that I mentioned this to the doctor with the sleep study results, because with the retention of CO2, more oxygen would actually be a very bad thing. A build up of CO2 reminds the body to breathe harder in order to get more oxygen. Piping oxygen into the room would tell Micah's brain that he didn't need to breath hard at all because there was plenty of oxygen in his airspace. And then he'd breathe even more shallow and retain even more CO2 and we'd be creating all sorts of problems. That's definitely out.

Option 3 is to remove some glandular tissue at the base of the tongue, which I'm assuming is vastly different than tongue base reduction surgery. I'll be sure to ask everyone I know about this if we ever pursue this route.

I was lucky in that we went directly from the Children's ENT to the pediatrician since Micah needed a check-up for Special Olympics participation this year. After the physical, I asked the doctor's opinion on the whole apnea/CO2 thing. He agreed with me that the apnea wasn't a concern, unless Micah becomes lethargic, loses pep, and is very tired all the time. (Dude, I wish!) (Okay, at least on occasion. Not as a permanent thing. Can he at least sleep in on weekends until 7?) The CO2, however, could affect his heart and brain, so the doctors are in agreement there. (Do you have any idea how often doctors opinions differ on things like this? It kinda scares me.) I asked how we'd know if Micah's heart and brain were affected. His best solution, knowing Micah's cooperation level, was an EKG to see if his heart was working too hard, and therefore enlarged. (Nothing was said about the brain. His poor, broken brain. It's got so much wrong with it already with the Downs and apraxia.)

My pediatrician is a wise man, and one that doesn't panic. I am now awaiting a call from a specialist to discuss some things, and will schedule that EKG with her at the time. But I'm kinda thinking that after all this fuss and to-do, we're just going to decide that Micah have lived like this for nearly 10 years, and he'll probably continue to live like this, quite happily, for the rest of his life. With an occasional EKG thrown in for good measure.

I call this whole shindig A Lot Of To-Do For Nothing. But I did learn that Micah will tolerate a sleep study. I'm proud of him for that.