Mar 28, 2011

Wow! A Nap CAPPED!

OMG! I had to share. Even though we are hectically packing like crazy people for the big move this news is just too big to wait! For the past year or two every few weeks or months I try to keep the cap on when Ainsley naps. Every time after about a half hour or so she wakes up. Obstructive Sleep Apnea is the term for when you obstruct, cutting off or reducing airflow, during sleep. In other words she NEEDS her trach to sleep(that is, until today). This nap was about an hour and a half long and she sleep soundly. I often take video as a means for evaluating progress. You'll see in the video that her breathing is a little loud, but it's not bad, and the more important thing is that her oxygen sats stayed up and she stayed asleep.  Interestingly today I went into an in-depth explanation of why I wanted her to wear the cap while she slept and told her I'd be listening on the baby monitor and would come take it off if she was having a hard time. I don't really think that is the reason for the difference but a part of me can't help wonder at the coincidence. Of course one little nap doesn't equal a decannulation plan, but it does hint at the possibility down the road.


  1. Yeah!!! Great news and exciting progress during a very stressful time! Keep up the good work. I bet you are getting super excited for the big move!!

  2. wahoo!!!!This is wonderful!!!!!! hope your move is going smoothly!!!!

  3. Susan, that's fantastic and you're right -- very encouraging. Go Ainsley!!

  4. Amazing!!
    Susan sometimes I wonder about that with regards to your explaination to her...sometimes I think they try so hard for us because they know it's important.
    I could watch her sleep and just not get bored...I love how they look when they sleep..there is nothing like it in this world.
    Love you and miss you.

  5. Holy Cow! That's awesome. And I would say that's a very good sign!! So encouraging! I'm going to do what you suggested and try to cap Harlie myself before I go to the trouble of scheduling a sleep study. I certainly don't need to go through all that trouble just to be disappointed. Would that be the next step for Ainsley? That's just so freaking exciting!

    Thank you for the good news! I needed it today. It feels so awesome to be so happy for someone else!


  6. Thank you Christy. In our case she's done so poorly that there was little point to a sleep study other than to confirm what we already knew, she couldn't do it. So our only hope was that something changes (why I try periodically) or to use CPAP while she sleeps. If we see more success capped while sleeping then we'll probably do a sleep study. Then again if she's successful capping while sleeping at home then the next step is probably a decann trial. But we are going to get through the move and settle in before we even consider that. I hope this wasn't just a fluke.

  7. That is so great ! She looks so peaceful and comfortable too :)