This is the story of my daughter, Zadie, who was born on May 31, 2011 and diagnosed with Pierre Robin Sequence. I hope the blog helps others going through what we've been through (and are still going through).
Tuesday, January 15, 2013
Knocking on wood....
Zadie's been really healthy! (knocking on wood). Her brother has been feverish on and off for the past two days, so I'm afraid of her catching whatever it is he's fighting. But meanwhile, she's been great. I've been trying to work on the Passy Muir Valve (speaking valve), but she's such a little stinker that she doesn't want to keep ANYTHING on her trach at all. When we're out of the house, I'll manage to get her to keep the HME on most of the time, but she still pretty much takes it off constantly. And when we're home, she pretty much downright refuses to wear one. So when I try to put the PMV on her, it's the same issue. She'll keep it on for a minute or two and then pull it off and hand it to me. I talked to the ENT's office today to get suggestions on how to get her to wear it longer, and they just suggested distractions (like TV, iPhone, etc). Any trach moms have any other suggestions?
Labels:
Passy Muir valve,
trach
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