YES WE DO!
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Reaction?........
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Interpretation : "What the hell are you doing to me? Do you REALLY think you can fool me into thinking that's an "elephant mask". Are you people crazy?
Yep. This should be FUN.
NOT.
But it's necessary. Ainsley can do well without the trach but without it we know she would have obstructive sleep apnea so we are trying CPAP (with her cap on) while she sleeps. If she can use CPAP successfully at home then we should be able to move forward to attempt decannulation when the time is right (likely after she has eyelid reconstruction surgery, sometime in the spring).
Key word: IF
She's going to need the CPAP or the trach. We'd prefer CPAP.
Today our DME brought the machine and we tried some different masks. I wore it and pretended to be an elephant. "Oh isn't this fun Ainsley?". At first she let us try it on her. Then she cried. She wasn't fooled.
I didn't even attempt to turn the machine on while she wore it. But I tried it myself. It's not pleasant all that air rushing up your nose. We'll see how things go but I'm anticipating this is going to take some time and will be a difficult adjustment. I'll let you all know how it goes. She's had a harder time wearing her cap because she had a slight cold last week so we'll wait a few days before trying it out for real. For the next few days we'll be simply working on "mask desensitization".
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Elephant? Really Susan.
ReplyDeleteTry Snuffleupagus....who doesn't dig him?
Serious you crack me up....where's that video you doing the elephant thing. I wanna see it.
Ainsley is looking like you're gonna make me do what? Ummm no.
This is actually huge and I know it's going to work out.
Hugs.
All the love in the universe from me to you.
Wow! CPAP!!! That's awesome! I do not envy the battle you are going to have to fight to get her to wear it, though. But, I am crossing my fingers that she will surprise you and get used to it pretty darn quick.
ReplyDeleteThis has a lot of promise. Sending you lots of good vibes and luck,
Christy
Susan,
ReplyDeleteWe have 2 children with central sleep apnea, one of which sleeps with c-pap. He has for over a year..
If she understands rewards, then get a stack of her favorite books and videos and only let her read/watch them when she is wearing her "elephant nose"(not the machine, just the mask), which is exactly what we call it in our house. Do this until she tolerates it at least half an hour and then transfer it into a bedtime routine (if she'll only wear it when she sleeps).
When she will fall asleep with it on (making sure you take it off within 5-10 minutes of her falling asleep), then you are ready to trial the machine. But what settings do they have it at and have they done some kind of testing to make sure it's the right one?
Give me a ring or shoot me an email if you want more points of wisdom with this crazy thing...Hugs...
On an upnote, most kids, after wearing while they sleep for a day or two or three, realize how much better they feel and will beg for it at night (Isaac certainly does!)