Fourteen months ago Bradley and I did a sleep study at CHLA. He sort of slept and I studied him most the night. It was one of those weird appointments where he was more compliant than usual because he was given his night time meds and then he started to get super tired and let the tech get all the wires in place. Oddly enough, he really didn’t get more than an hour or two of deep sleep…??… Hmmm strange. How odd that a little guy being constantly monitored didn’t sleep really well. Weird. HAHA….
But, they got enough to learn that he has moderate sleep apnea. And by Moderate, he is barely over the threshold of moderate. So that left us in a weird place of do we want to work with him to get him adjusted to a CPAP machine or wait and see what happens over time. Well, we decided to go for the CPAP. What?! Are you crazy? Well, maybe. But this time I think I might have got this one right. My thought was simple, what happens if we wait and he goes from a slight need to a desperate, it’s he wears it or we lose him kind of scenario? If we practiced now, if the worst happens, he won’t be coming to it as a new customer - older, more stubborn, and stronger.
So they delivered a CPAP machine the day before Thanksgiving. I stared at it as I took it out of the box and put it together, figured out how it worked and then I put it back into the bag and put it aside unable to look at it as Thanksgiving came bearing down. Cowardly? Yeppers and proud of it. We got through the Holiday and the weekend and we worked on a few minutes with the headgear alone on and then a long break and then a bit longer and then a long break. We would give him his token chart with his movie and he would get tokens for leaving the machine on. We soon learned that the size was completely wrong and that required some frustrating conversations with their customer service who finally sent a rep out to work on the best sizing for Bradley and he even helped us with his best tips and tricks for getting Bradley used to it and then he also gave us the stress relief that comes with time. You see, we are supposed to have him on for four hours a night, and I was really concerned about it, but our rep was great and told us not to worry about it and just do the best we could with getting him used to it.
So we worked with Bradley with his movie and his tokens and then I just decided to give him a shot at the headgear and the machine. And he did great. He did incredible with wearing the headgear with the machine running while he was sitting with dad and falling asleep, I was so proud of him. He wasn’t so great at the machine working while he was sleeping in bed though. So we spent some time with working out his meds differently. I adjusted his night time meds so that instead of trying to do a second dose when the first wore off a few hours later, I gave him the whole dose at one time so that he would sleep heavier earlier. By sleeping heavier earlier, we could get him to sleep with some good time while he was out with us, then we could take him back and put him to bed, hook him up to his machine again and most nights, he actually keeps it on.
The Customer Service calls are nowhere near any easier, but the use of the machine itself and getting him to accept the use of it has been improving nightly. And though I know I am jinxing myself and Bradley by saying this; he has been sleeping so much better, more often than he has slept in a few years. If he will keep the CPAP on for longer than the one minute after I leave his room, he will sleep pretty well. Sometime in the middle of the night he will throw off the headgear, at that point it will either wake him up and he’ll come in to me. I bring him back to bed and help him settle back down to get to sleep, sometimes in moments, sometimes in increments of twenty minutes. OR…sometimes, Bradley drops off the headgear and turns over and goes right back to sleep. When he does that, he and I don’t visit and he and I sleep through the night - and he and I are a little groggy as we try to face a new day with more sleep than we have on a regular basis. Those are just the weirdest days! And he’ll give me a couple nights of this, get me excited and comfortable with this idea of sleep - then he’ll have that night where he won’t wear the CPAP for long and then we’ll visit off and on every couple hours and I start my day like a zombie as if I have never had a sleepless night with Bradley ever before. Amazing how quickly one really wants to adjust to sleep; and believe me, I really want to be so used to sleep that I can wake up on my own without an alarm and feel completely awake. Ah…here’s hoping for that to happen some day! Until then, one night at a time. And for each good night; less adverts behaviors during the day, a little boy in a much better mood with more singing, more laughing and a little more playtime! Life is just better with the little boy when he is feeling better, sleeping better and living his best life! ❤️
31FOR21 Blog Challenge for Down Syndrome Awareness and Acceptance.
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