Wow, that was fast! Our pulmonologist, unbeknownst to me, rushed the results of the sleep study Ainsley had on Nov. 6th. Part of that included reviewing the results with a sleep doctor. I guess he's the man to know if you need something. He called me 3 days later with the results. It was supposed to take 3 weeks.
To review: Ainsley has Obstructive Sleep Apnea, or at least she would have if she didn't have a trach. I knew this even prior to the sleep study because even though we can put a cap on her trach while she is awake, if she falls asleep she starts to breathe heavily and will wake up 20-30 minutes later because she can't breathe properly. A sleep study is when they attach wires and special equipment to monitor the patient's quality of sleep. All the wires and sensors give them information about what the body is doing.
Ideally a child should have no more than 2-3 sleep disturbances an hour. A child with enlarged tonsils, if they were found to have 5 disturbances, would get a tonsillectomy. So hold onto your seats. Without the CPAP Ainsley had 38.8 sleep disturbances per hour. How is that possible? I'm not exactly sure because she did sleep. It doesn't mean she was awake half the hour. But I think there can be various disturbances happening at once, chest retractions, leg movements, and brain activity showing interruption to the sleep. I was a little surprised at how high the number was. But I knew that the results would be "bad".
The main reasons we did the sleep study were to find out "how bad" her OSA and to see if CPAP would help. And that is the second part of the results. I knew the pressure at home was inadequate for her to sleep, due to my trials. At the sleep study they see how she did at a given pressure and if it wasn't enough they would increase it and repeat that process multiple times until they found the right pressure setting. What they found is that a pressure setting in the 7-9 range got her into the 2-3 disturbances per hour range.
Our pulmonologist said that a setting of 10 is as high as they would generally go for a child. Based on her results were, measuring CO2 and O2 levels, BiPap was never needed. So it was effective. There was a chance that the CPAP would not alleviate the obstruction, and it wouldn't even be an option. What is clear is that she REALLY needs the CPAP. I knew that already but it is a little sobering to hear the numbers.
If we were to move forward with removing her trach and using CPAP for the OSA she would have to be able to wear a full face mask every single night for the whole night, maybe for the rest of her life. Even when she is sick. Probably especially when she is sick. Right now because she has the trach she sleeps beautifully and comfortably all night. Of course there is a chance that removing the trach might improve the OSA some without having that tube in the middle of her airway. But we can't count on it. In fact we have tried taking the trach out to see and though she can go a little longer she still obstructs in the same way. I did this because I knew she was fine during the day and I just couldn't put her through the CPAP trials last year without knowing that she really needed it.
In order to decannulate we would just have to be sure, really sure, that she could do it and it is worth it. And that I'm not too sure about. So our doctor approved plan is to wait until spring without doing any more CPAP at home. We are still waiting on Medicaid preauthorization before we can schedule our trip to Cincinnati (Our primary insurance doesn't require preauthorization.). It may be that they have different ideas, like surgery but we won't know until they've seen her and reviewed her data.
How do I feel about all this? Surprisingly good. Over the years I've come to accept our situation for what it is. If I didn't I would be suffering a lot of emotional pain as I did the first several years of Ainsley's life. All parents want the best for their children. We naturally want to fix things for them and relieve their suffering. Unfortunately there are situations when this isn't possible and not just for kids with special needs or medical issues. Parenting is a great challenge. Luckily it is also a great joy.