In case you're wondering, we STILL HAVE NOT HEARD FROM THE CINCINNATI PEOPLE. This could mean several things:
1) they are very busy
2) there is obviously no rush on their part to get the trach out
3) no one realizes how worried we are
4) all of the phones in the midwest have been stolen by an evil overlord
I did briefly talk to our point of contact early last week and she told me they would be meeting soon and she would get back to me, so I know the ball is rolling. I just didn't realize it was a 600 pound ball that I would have to push uphill.
I should not be surprised. Nearly everything doctor-wise is Sisyphean. We really shouldn't even call them doctors at all. We should call them The People Who Require Sisyphean Efforts of Not Getting Punched In The Ear. Because that's what they can fucking be sometimes.
However, I'm going to cut them a little slack because of this weekend.
Thanks to the Cinci folks, we came home from our trip with this cool little doodad called a passy muir valve. It fits onto the end of the trach and allows air to be breathed in, but not out. So in order to exhale with the PMV on, Ike-a-saurus has to push air up through his vocal cords and out of his nose and mouth. Cool, right?
The wee-er one had been referring to Ike's valve as "that tang on his
trach." Funny, but, uh, Sisyphean to explain to people. So, I told her she could call it a valve. Now she says, "that balb on his
Well, because his stenosis is grade III (75% or greater airway obstruction), we were told by our doctor in Austin that he would never be able to tolerate a balb. The doc here wouldn't even let us try one out. In Cinci, though, they've come up with a way to modify the valves so that even kids like Ike-a-saurus have a chance to learn to vocalize.
When we were in the office up there, the NP was able to test the valve out on Ike, determine he wasn't tolerating it, and right there in the exam room whip that sucker off to the countertop and drill two holes into it with a Black & Decker cordless drill.
With the two tiny holes in the side, he can tolerate the valve just fine. It means he blows less air up through his cords, but at least he gets a shot at trying, right?
Well, he's been trying mightily. And this weekend he had some major success. Real baby noises!
But even better? Today, WITHOUT the balb, he made the exact same noises. It appears that wearing it has trained him how he needs to breathe if he wants to vocalize. He has been squeaking and honking all day. It is enough to reduce me to a slobbering puddle of weepy mama-ness.
I haven't heard his voice since February.
Hearing it fills me with such a loving peace, that at those moments I wouldn't care if the Cinci docs never call us. They've already given us his voice back.
I could just sit, snuggled up to my tiny guy's fuzzy head, listening to him proudly shout gah! and ah! and ah-ah!, and feel utterly content.
He still can't vocalize a lot, and it takes a tremendous amount of effort on his part, but he has fucking outsmarted the balb. And this after our local doc told us we'd never hear his voice as long as he had a trach.
This is a lesson for me, because for this little dude, nothing is Sisyphean. Nothing is.
He's all, "Up yours, impossible task. I drink your milkshake, bitches. I drink it ALL."
I need to be more like that. It's time to drink the evil Cinci phone overloard's milkshake, don't you think? I'm going to drink. it. up.
14 thoughts on “The Balb”
Woo! Hoo! That is just so beautiful. Go Ike Go!!
John McIntyre, (involuntary) retired copy chief of the Baltimore Sun, recently had a great essay on his blog on “Questioning Authority.” He said this about his daughter:
***My daughter has a relatively mild form of cerebral palsy from a case of bacterial meningitis in the neonatal ward when she was two weeks old. She was two years old when we moved to Baltimore and my wife and I took her to see a specialist at Johns Hopkins. After a forty-five-minute examination, the specialist pronounced that she was intellectually disabled as well as physically disabled, and recommended treatment accordingly. Fortunately, her pediatrician subsequently cautioned us not to credit that diagnosis but to trust more in our own judgment.
Alice graduated from Swarthmore in 2006 with an honors degree in Latin and Greek.
wow. That made me cry.
Completely awesome. I can’t believe he’s doing it on his own now. Well actually, I can. Ike-a-saurus is pretty amazing!
Mopping the tears off my laptop…what a gift you’ve been given. Thank you, God, for baby noises!!!!
em also has (well, had until last month) grade III stenosis (86%). she could talk just fine w/o a speaking valve. she could even shout. no crying sounds or laughing but plenty of talking.
docs sometimes don’t know NOTHING!
YEAH IKE!!!!!!!! So happy for baby noises. Those squeaks and squawks are music to mama’s ears. So happy for you.
Wow! Awesome. That post made me cry… and made my day. So you must be a pile of mush on the floor by now. 😉 Baby noises are the best!
Ike kicks serious boo-tay!
PS. When dealing with fancypants doctors/their offices, I’m all about being courteous and nice– with some “I Drink Your Milkshake” behind it. (You are on to something!).
PPS. Thanks for the use of Sisyphean. Classic.
This is such wonderful news!
Oh, Ike is amazing! And I love the hands on, outside the cubical thinking doctors who pick up the hand tools and make stuff happen! Yay!
So.. um.. could we.. um.. maybe.. someday… have a little tiny vid of Ike vocalizing? I’m sure I’m not the only one who would love to hear him.. but of course, only if you’re comfortable with it. 🙂
Congratulations! I cannot imagine how much those little noises mean to you and your family. Hang in there- more good things to come, I’m sure.
Yes!!! Go Ike!!! Baby noises rock. Congratulations on such a huge and unexpected accomplishment! Can you please record the moment where you tell his local docs BOOO-YAAAA bitches? And btw, was Ike surprised by the sound of his voice?
And he must be having so much fun doing it! That’s so wonderful.