Saturday, May 16, 2009

Speaking Valve breakthrough!

So, for another big jump forward - Harlie decided that she would cooperate a little with wearing her PMV (speaking valve). It is a little piece of plastic that goes on her trach - it allows air in but doesn't allow air out. So, she breathes in through her trach, but is forced to breathe out through her mouth and nose. The whole point is to allow her to make sound so she can learn to talk. Plus it helps to strengthen swallowing.

Anyway, since it is a totally different way of breathing, it probably feels weird to her and for the most part she doesn't like it. Of course, it could be that she just can't exhale enough - which would be hugely uncomfortable. Before, she wouldn't even let me put it on her. And sometimes the pressure of her trying to exhale would blow it off and it would go flying across the room. And she would gag and cough. None of this pleasant for anyone. Her ENT said that if she could tolerate it (meaning if her jaw was fixed and enough air could pass freely) then she wouldn't mind wearing it and decannulation would be in our near future (which isn't the case).

So, we try it, abandon it, try it again, etc. Sometimes I just don't feel like being disappointed, so I don't try it for a while.

Well, on a whim, I took it with me to speech therapy on Tuesday. Michelle put it on and Harlie didn't flinch - she just kept right on with her activities with Michelle - for at least 30 seconds (which is a loooong time)! We were so surprised and excited!

So, later on that day, I was doing our feeding session at home. I put it on her and she kept it on - without any visible discomfort for at least five whole MINUTES!!! HUH? Talk about excited! The only negative was that she wanted to "talk" the whole time (meaning she was making sound with every exhale, kind of like humming but with your mouth open). So, it was hard to get her to stop so I could put food in and have her swallow it. But, what a wonderful problem to have! I remember that our other speech therapist told me that she needs to learn to control her vocal cords so she doesn't make sound with every exhale.

So far, the longest she's worn it straight has been EIGHT minutes!!! Whoa!!! But, then she takes it off, and puts it back in its container, and won't wear it again. I guess she can't make things easy - it might throw us off.

Well, it's time to sign off. My friend, Heather, signed us up on Wednesday for the Carytown 10k, which is tomorrow! I didn't think I'd be able to run in anything since we were supposed to be in the hospital. Now we're doing the 10k tomorrow and the Run like a Girl 8k in two weeks! Eh, it'll be good for my stress.

More later!


Donna said...

YEAY Harlie on the eight minutes - that's awesome!! Good luck on your run tomorrow...Let me know when you're ready for our much needed Mommy Night Out! :)

Rene said...

Go Harlie!!!! Tommy started slowly as well, but we got to the point we would ask him if he wanted his "talker" after we did trach care and he'd get excited. He'd say "ahhh" the second we put it on! I know you're on "Harlie Time" with how she does things, but if she figures out she can make all kinds of noises when she wears it, maybe she will keep it on longer and longer.

Susan said...

Rene has a good point. Maybe if you can come up with a fun game that ellicits sound from her (like a finger play or something) that makes it fun and produces some good sounds she'll be motivated to keep it on more and more. Hooray Harlie! It's a great start and I hope she keeps it up.