"We live on borrowed time. Let's celebrate and sing, as we walk bravely into the unknown....."
Saturday, April 7, 2012
Update from Oz
Just wanted to fill everyone in on our visit to CHOP yesterday. Incidentally, the Wizard of Oz references started when we began referring to the airway surgeon as "The Wizard". This led to CHOP being called Oz.....which then led to lots of unnecessary but entertaining analogies about flying monkeys, witches, scarecrows, etc. You get the idea.
The "worm bench". Always a favorite!
At first there was some concern that we were going to get benched from the procedures on Monday. (Adam is having a bronchoscopy, and his g tube stoma surgically closed.) He was on a 5 day course of steroids two weeks ago to help this crazy cough he's had, and typically they don't like to do any sort of surgery too close to when the kids have been on steroids. After some deliberation though it was decided that since it was a small amount for a short time, and since his lungs sounded clear during his exam that it was ok to go ahead.
We had lots of fun at the voice clinic visit, and got some good news too! First Adam got to be totally in his element....singing, talking, and telling stories into a "weal yife micwophone"! (which was attached to a computer that mapped his voice...volumes, patterns, etc) He had the speech therapist thoroughly entertained! Then we had audience with the wizard, who snaked a tiny camera down Adam's nose to get a look at his throat.....and she somehow managed to keep him calm enough to talk while she had it down there! (Wizard...see....this is what I'm saying.) This birds eye view showed that Adam does not, in fact have a partially paralyzed left vocal cord as we had previously believed. Both cords vibrated beautifully! The entire mechanism is slightly swollen and more sluggish than normal....something about having to be cut apart and put back together and whatnot.....but his voice does, in fact, function exactly as it should. Suh-weet!
"Sunny day, sweeping the clouds away...."
Waiting for The Wizard
Everyone was very pleased with how much Adam was talking, and with all of the progress he has made as far as volume and being able to control having different sound qualities to his voice. (We call them the Elmo voice and the Cookie Monster voice, and he can use either if it's requested.) We learned that the lower, raspier sounding voice that he uses most often is a result of something called supraglottic phonation. (fancy, right?!) Basically that means that he's using the structures above his vocal cords to do most of his talking.....apparently very common in people who have had airway/vocal cord reconstructions. When he speaks in the higher sounding vocal timbre, he's using all of the structures appropriately, as a person with a normal throat would. The consensus was to let Adam continue to explore and play with his voice for another six months to a year, but that after that time he would be a great candidate for more formalized sort of weekly voice therapy exercises. They feel like he has the potential to gain more volume, and minimize some of the gravelly sound over time.
Passed out on the couch after we got home!
I'll be sure to update everyone again after the procedures on Monday. This should be....cross everything!!!.....his last bronc! And I'm not gonna lie....I will NOT miss that hole in his belly one tiny little bit! We're also approaching the one year anniversary of Adam's reconstruction surgery, so stay tuned for some sort of weepy, reflective, how did we get so lucky post coming soon. I know you're all excited now! In the meantime, everyone take good care, and enjoy the Easter/Passover festivities with friends and family!