The Ironic Thing About Fixing Henry's Sleep Apnea

Henry finally came home last Wednesday, after a week-long hospital staycation following his tonsillectomy/adenoidectomy. It took that long to get a BiPAP ventilator set up at our apartment for Henry to use at night.

The t/a surgery cleared his airway and made a significant improvement in his breathing both waking and sleeping. It seems to have also cleared up his chronic runny nose :)

But, because of his hypotonia, it still takes more effort for him to breathe at night than his pulmonologist would like. We don't want him spending too much energy on breathing that he could be using on development. So basically, the surgery fixed the sleep apnea, but didn't totally fix Henry's nighttime breathing issues. Hence the BiPAP.

The BiPAP is similar to a CPAP which is commonly used for people with sleep apnea. The difference (to the best of my understanding) is that a CPAP gives constant "positive air pressure," meaning that it blows air into the person's nose/mouth to keep their airway open, and a BiPAP also gives positive pressure, but at two different levels which alternate to help Henry breathe in and also breathe out. With Henry, part of the problem is that his little lungs and diaphragm don't exhale effectively which means he could end up with too much carbon dioxide in his body. Hence the BiPAP.

On Monday night we had a scare that sent Henry to the ER. We knew going into his original procedure that the doctor would only do the tonsillectomy if he felt it was absolutely critical. They don't like doing that surgery on kids as young as Henry, and one of the reasons is that they are at higher risk for having post-surgery bleeding. For Henry, it was absolutely critical and the doctor still did only a partial tonsillectomy to be on the safe side. Unfortunately, Henry did develop bleeding a week and a half after the surgery. When I saw him coughing blood, I took him to the ER and his own ENT, Dr. Chang, happened to be on call. Henry had to go back into the OR so that Dr. Chang could take a look at the surgery site and cauterize it again. Henry spent just one night in the hospital this time, and came home the next day feeling fine.

Back in the PICU at LPCH... getting some rest after the procedure.

I realize that none of that is ironic so far. I'm getting to that part.

With all these measures taken to enable Henry to get better quality sleep, you might think that we're all getting better sleep. But better quality doesn't necessarily mean better quantity. Before the surgery, when he was still snoring like a chainsaw, Henry slept through the night just fine. He would typically sleep from about 8pm until 8 or even 9am. But his hospital stay has messed up his sleep schedule! He got used to being woken up at night for meds or a vitals check and getting a bottle to help him go back to sleep. So now he is still waking up for milk in the middle of the night and getting him up for a bottle means taking of his mask, turning off the machines... and then putting the mask back on and turning the whole shebang back on afterward. Which is ok if you do it once and he goes back to sleep... but what's happening is he'll go back down for maybe half and hour and then wake up and fuss and we have to do the whole thing again! Instead of helping Henry sleep through the night, this whole ordeal has actually messed up his ability to sleep through the night!

So, no, friends and family. We are not all getting more rest around here. James and I haven't had a decent night's sleep since before Henry's surgery! In fact, big brother Calvin has decided to have a sleep regression of his own. It started with him waking up at 5 or 5:30am instead of 6:30 or 7 like he used to, so we tried a later bedtime for a few days, which seems to have decidedly backfired. The past few nights he's been waking multiple times a night, and last night James gave up and let him sleep in the bed with us. #facepalm

It has to stop! Mama and Daddy need sleep! There's just not enough coffee in the world!!

We gotta night-wean Henry again and I think we'll go back to an earlier bedtime for the Bean.

I mean, I am thankful that Henry is getting more restful sleep and that we don't have to worry about him, ya know, not breathing during the night, but man oh man I miss getting a full night's sleep!!

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Oh sorry, I just fell asleep while typing this post.