Monday, December 29, 2008

Sleep Apnea/CPAP update

I looked back and realized that we got things all smoothed out and have a system going to control Jack's sleep apnea and I have not posted about it. If you go back and look at posts regarding CPAP/Bipap and sleep apnea, you will see that this has been a long hard road that involved over a year of functioning on little to no sleep. David and I both continued to work our full-time jobs, take care of Jack, keep our household running, and even do battle with well-meaning yet misguided school officials while getting it all worked out. Honestly, I don't know how we did it. I know that we did not do it alone. We had many many people praying for us and, of course, God had us in his hand with his plan in mind the whole time.
The end result is that earlier this year we got a Bipap AVAPs. It is a wonderful machine that measures each breath that Jack takes and automatically adjusts the inspiratory pressure up and down as needed. Jack tolerates this machine so much better and we are all actually sleeping most of the night through most nights. We still have difficulties when Jack is sick because he does not tolerate high levels of pressure then. Jack does not usually desaturate (drop his oxygen level) unless he has some extra congestion. Once we add a little oxygen, he does fine. Jack still does not tolerate putting the mask on while awake. We still walk the fine line of getting him to sleep deeply enough to get the mask on but not so deep that he drops his oxygen so low that he starts waking up again. He actually does get it now that the mask helps him to breathe. Sometimes, he rouses a bit while we are putting the mask on, we tell him that it's okay, it's just his breathing mask and he goes back to sleep while we get the mask strapped on correctly.

Here's all the stuff that I can think of right now that is important regarding using the Bipap.
1. The right machine: We had to research how the machines worked so we knew how to ask for the right machine for Jack. This part would have been a lot harder if I did not already understand respiratory terminology. You can learn and if you write to me, I will help you the best I can.
2. A mask that fits: If the mask does not fit correctly, you will hear air leaking around it. If you hear air, you can bet that your kiddo can feel it and who wants air blowing into their eye or around their face while sleeping? Also, if there is an air leak, the machine cannot deliver the needed pressure. Jack is currently using an adult large nasal mask as a full face mask. Having a craniofacial condition makes it a bit harder to find a mask that fits correctly. The ones that we have tried that were made for children just won't work with Jack. Your respiratory supplier should help you find a mask that fits your child.
3. Headgear that works: The purpose of the headgear is to hold the mask in place. Sometimes, the headgear that comes with the mask you order does not do the best job of holding the mask in place for your child. Experiment! If you've got sewing skills, sew something that you think will work. No sewing skills, just be creative! Pay attention to where the headgear and mask tends to slip on your child's head and find some way to make adjustments. We attached additional pieces of velcro to lessen slippage of Jack's mask.
4. Gentleness combined with a willingness to lose sleep if necessary to wait him out: As I mentioned before, we have to hit that special combination of asleep enough but not so deep that he drops his oxygen level. Some nights, if we don't get him hooked up pretty quickly, it takes a looooonnnnnnnggggg time to get that mask on. If Jack starts waking up and gets fussy, we stop and comfort him and let him get back to sleep. We wait and try again and again and again and again and again and again as many times as it takes. We have learned that it does not pay to try to fight him. He ends up awake and screaming and we feel like we've tortured him. We don't want to make him afraid to fall asleep.
5. Be willing to go your own way: Throw out all the advice given to you by the "professionals" about how to get your kid to wear the mask. It must work for some kids and that's great if it works for yours. If not, be willing to come up with your own plan! That's what we've done and we are all sleeping much better.
6. You may have to lose sleep and/or reconfigure your sleeping arrangements to maximize sleep: If your child is sleeping in another room down the hall from you, you will not be able to tell when he/she is gently rousing and needs gentle reassurance that all is well and that thing on his/her face is helping him/her to breathe. When learning to tolerate the mask, this rousing will happen more frequently. In Jack's case, gentle rousing lead to a panicked, frantic pulling at the mask to get it off. If we did not notice him gently rousing, we had a screaming child on our hands. If your child is gently rousing, you can hit the "ramp" button on your machine so that the pressure is immediately lowered and the child does not have such a high volume of pressure hitting him/her. Doing this before panic sets in can sometimes be the difference from having to take the mask off and start all over and keeping the mask on and everybody getting sleep.

That's all I can think of right now. I hope this post has been helpful. If your child wears CPAP/Bipap and you have tips of your own or your child needs CPAP/Bipap and you need more information, comment on this post and I will reply.


Spry Doodles said...

Thanks for this :). The BiPAP for my 5 year old has been so hard. It's still a work in progress......

Marie said...

I'm glad you found it helpful. If you have any questions that you think I might be able to help with, feel free to email me at or post your question here. I get notified everytime someone leaves a comment.