Thursday, March 11, 2010

Clinic today

Maryn had her aerodigestive clinic appointment today. Nurses, therapists, and doctors, OH MY. Papa and Auntie Amy took her, but I was able to make it for a few minutes.

Pulmonology is happy with the status quo, especially since she's coming off her oxygen. But she wants to put the g-button back on the table. Seriously.

Gastro is adding another med to the repertoire to try and curb the spitting. G-button and fundo talk as well.

Speech and OT want us to continue encouraging oral stimulation. They suggested putting a bit of her food on some of her durable toys. She is really starting to explore things orally, but only on her terms. If anyone else tries to put something in her mouth, we get head-throwing and back-arching to the nth degree. Good chance of never going back to the bottle. When/if she starts feeding orally again, we might just go straight to a sippy cup.

ENT wants another bronch. If the narrowing is still beneath her vocal cords, he may "balloon" it open to see if that helps. But she will still be trached for, at the minumum, another 6 months. (Honestly, I don't see de-cannulating her being a realistic possibility at all this calendar year.)

They said they might be able to coordinate the bronch/balloon thing with a g-button. That is good, because I don't want to put her under more than necessary. And after all, odds are we will be back in for a shunt revision some time this year too. We would be inpatient for a day or two. I guess I thought I'd be more upset about said prospects, but so far I'm ok with it. Maybe I've just resigned myself to the necessity of it all. Maybe it seems better now that docs at least gave her a chance to improve first, instead of just saying "cut" right off the bat. I don't know. But it looks like we'll be crashing the party at Children's in the not-too-distant future.

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