Nov 16, 2011

Sleep Study Results Are In

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.


  1. Glad you got some answers Susan. We're looking forward to your trip to Cinti. :)

  2. At least now you know there are some options. You already knew she had the OSA, but now you know that it can be controlled with the CPAP. Given where she is with it though, you are right that you would really have to weigh the pros and cons before you attempt decan.

    I know we are on the lucky end, and even though Luke needs CPAP, it is at a minimal setting and he is ok on his side without it. I might feel differently about our choice if he had to have it 100% of the time every night. For most CPAP users the doctors consider you to be in compliance if you wear it 4+ hours a night. And you are right that being sick does change things. For Luke a certain level of sickness is helped by wearing the CPAP, but beyond that it can make things worse. Those times are hard since there really is no way that he breathes well. I also got to see what it would be like if he were more dependent on the CPAP after his last surgery. The lowest level wasn't sufficient, but we couldn't change his machine to give him a higher pressure. And it was horrible watching him trying to breathe and retracting. If this is what you sometimes see with Ainsley, I can more than understand your reluctance to rely on the CPAP.

    I didn't mean to write so much, but I still think of you guys often, and love to keep up with what is going on with Ainsley. Keep us posted about what you do to meet her AAC needs as well. We have made the opposite move you have - we are going from an ipad (though not with Proloquo) to the Vantage Lite. We don't have the Vantage yet, but in trials he has done better with it than any other communication system we have tried so far. We went through a local AAC clinic to get the device; insurance is paying for it. We bought the ipad out of pocket and hope to still be able to use it with him for other things like drawing and picture stories.

  3. That is the key question isn't it.
    Do you trade trach for CPAP? Oy.
    Hmmmm, I am sure we are going to be in trouble when it comes to night time sleeping come April.
    You are so right, big challenge but even greater joy when it comes to our beautiful children.
    Love you.

  4. Hugs, Susan. For those moments when/if you don't feel so good about where things are. I do think sleeping is pretty darn important. And to have the ability to sleep comfortably is a reasonable reason to keep the trach. I'm anxious to see what Cincinnati will say.