Nov 13, 2010

Exciting CPAP Progress

Maybe you've been wondering what's been going on with our CPAP trials. The answer is not much. Kids don't like CPAP, that's no surprise. Heck, adults don't like CPAP either. But I quickly discovered that Ainsley really didn't like the feeling of the air coming into her nose and out her mouth. I tried it myself. It is very uncomfortable to try to breathe through your mouth with the nasal mask on.  When I closed Ainsley's mouth she tolerated it much better but since I can't hold her mouth shut while she sleeps I lobbied to get a full face mask or a chin strap instead. (In the mean time we continued to use the nasal mask for 15 seconds at a time before her naps.)

Getting the full face mask proved more difficult than expected. I thought our number one goal was for Ainsley to be successful and comfortable. However the respiratory therapist was concerned about safety and relayed those concerns to Ainsley's pulmonologist. Even saying to me "That maybe she just wasn't ready for decannulation."  Because she can't tolerate the nasal mask?! Logically none of it made any sense and I'll spare you all the details because it is complicated. Let's just say I spent a fair amount of time on the phone with the pulmonologist, his nurses and the respiratory therapist. In the end the pulmonologist could see the logic of my argument and I got what I wanted and the doctor wrote the scipt for the full face mask. FF another week and a half the respiratory therapist finally delivers the mask at our home, we try two for fit and voila' it makes a huge difference. Do I know my kid or what?!

Later that day I did our usual routine: CPAP for so many seconds with a reward of of reading a book, repeated two or three times. She seemed much calmer and was able to increase the number of seconds over the following days from 15 seconds, to 20, and then to 30 seconds at a time! We even strapped the mask on rather than just holding it, which she doesn't like. All these times she was capped so she was actually breathing through her nose and mouth with the CPAP airflow on. She was doing well! Although she wasn't liking it she wasn't panicked like she was with the nasal mask.

So I thought it was time to up the ante and really do it. At bed time last night we strapped the mask on. She'd fallen asleep on me during a movie so she wasn't too happy but she eventually calmed, the airflow was on but she would start to cry if we put the cap on. So unfortunately we didn't get to see if the CPAP actually helps the obstructive sleep apnea. But we did see that she can tolerate wearing the mask and the feeling of the air on her face (it was on). We even put her down to sleep and she was fine though she stirred a little after an hour or so, so we took it off so we could get a better night's sleep.

We decided the next step is to increase the amount of time she will breathe with the mask on while capped and we think we need to do that while she's awake instead of when she's tired. And we need to make her bed more comfortable and get her to learn to sleep on her back instead of her stomach or side. I am really hopeful. What I don't know is if the CPAP will overcome the obstruction though chances are good. But I do think that she will be able to learn to sleep with this gizmo on. I can almost taste life without a trached child and it's oh so sweet.

The full face mask.

Doing it for 30 seconds.

Her favorite part. I let her turn the machine off.

Her last night, sleeping with the mask on (no cap though) and with airflow to her face.


  1. I know 100% that Austin would NEVER tolerate that. KUDOS to you for helping Ainsley through this. It's gotta be rough on her and you. I really hope this is the key to getting her a naked neck...SWEET!!!

  2. I'm totally impressed! Ainsley should be very proud of herself because that doesn't look like much fun and I'm not sure that our Caelan would ever tolerate that! Thinking of you and hoping the seconds keep growing :)

  3. What a trooper! I hope she continues to tolerate the c-pap mask and will be on her way to a naked neck.

  4. Good job Susan and Ainsley. Your tenacity is extraordinary!

  5. Yay for progress! I would find it excruciating to have to work up to 30 seconds of air flow and I'm jealous of your patience. And authority with the doctor. Good for you and Ainsley!

  6. I work in elder care and a few of my patients have switched to an alternative. I'm not sure how this will work for you and Ainsley, but it's a "maskless" cpap

    Still sort of a mask, but a lot less confining. Worth a thought, at least, right?