Charlotte had an appointment on Friday with the Ear, Nose and Throat doctor. He stuck a small camera up Charlotte's nose and down into her throat to take a look at her vocal cords and her airway structure.
And here's where we play the Good News/Bad News game.
Good News:
Her reflux appears to be better managed, and her airway is healing. She still has a stridor, but it doesn't appear to be a long term problem. We're hoping that within the next year, her airway will be completely healed from the damage done by reflux, intubation, and all the other crap done to her.
Bad News:
Her paralyzed vocal cord appears to be a permanent condition. The ENT encouraged us to start Sign Language, as it could very likely be her main form of communication. There's also a very real possibility that she will eventually learn to compensate for having vocal cord paralysis and will be able to speak with only one vocal cord. In that case, her voice will most likely be rather soft, and a bit "breath-y".
And that's all we know at this point. We're just rolling with it!
drat those good/bad news. i know you hear stories like this all the time, so roll your eyes if you want to.
ReplyDeletehowever, one of my good friends, who is now 32 has a paralyzed left vocal cord. she talks but has a little rasp to it. she does botox treatments, but other than the rasp it hasn't affected her life at all. she learned sign language as a kiddo but is totally verbal.
just a "you never know" :)
We faced the news that we needed to learn sign language when Eloise was in the NICU-- fortunately, it turned out that they were wrong about her hearing-- but it was such an overwhelming thought to need to learn another language while dealing with everything else... I know you all will take this on with grace as just another challenge to overcome for your baby girl but I feel for you that you are facing this stress.
ReplyDeleteThat is good news about the reflux and that they think her airway will completely heal. I agree with Lori-- drat that good/bad news!
ENT at CHOP is doing 2 kinds of surgery to help kids with paralyzed vocal cords (like Charlotte and Hallie). The first kind is temporary and involves bulking the vocal cord that does move. It's outpatient, non-invasive (it's done by guided injection via a scope) and something that has been done with adults for years now. The second is only being done at CHOP and involves re-enervating the paralyzed vocal cord by attaching a different nerve to it. It doesn't get the cord moving but it does get the cord mimicking movement (don't ask me the difference exactly since I'm not 100% clear on the science here). Anyway, the second surgery is more invasive (involves an incision and a hospital stay) but gives back more voice more permanently. It's been done on adults for years and on children 10 times, all at CHOP. Anyway, we are doing the first temporary surgery next week and then probably the more invasive one down the road so we can keep you posted!
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