Cocktail Party in Pediatrics: An Autobiography

I apologize for the lack of posts. I'm in vent training and have been spending most of my time either in conversation or meetings with doctors or learning how to care for a vent-dependent child.

I won't be allowed to take Maisie home until I pass a bunch of tests.

So I'm taking this pretty seriously.

Meanwhile, Miss Maisie the Great has been throwing a cocktail party in pediatrics. The doctors are trying to find the magic combination or "cocktail" of drugs that will give her or help her get the strength to breathe on her own.

That's what her autobiography should be called.

Cocktail Party in Pediatrics. An endless trial to find the right combination of meds.

I won't bore you with the details, at this they're switching up her meds, running trials, giving tests, poor thing's had more PFTs, chest x-rays, and neuro workups in the past two weeks than she'd ever had before.

In other news, she is doing FANTASTIC in speech therapy. We got her passy-muir speech valve in last week and she has been working so hard with it. She is now saying about a dozen words consistently and clearly.

1. Mama
2. No
3. Yes
4. Ow-wow
5. Ball
6. Pay (play)
7. Hi
8. Bye-bye
9. Dolly
10. Teddy
11. Don't
12. Want
13. Top (stop)

Okay, so thirteen. I might be missing a few. Since November I have carefully recorded every word that comes out of her mouth, and she maxed out at 62. We're a long way from there, but it's encouraging to see that all or nearly all of the words she is saying now are words she already knew, which tells us that she is not forgetting the words. She is just losing her ability to enunciate them.

You might also notice that like half of them are complain-y words. No, ow, don't, stop, etc. This all stems from her hatred of the ventilator and the trach. We are happy to let her complain, yell, kick, and scream as much as she wants. She's using her muscles and her vocal cords, and she is completely at liberty to hate the stupid trach. Hopefully the more she complains about it, the sooner it will be gone.

She also started physical therapy and has been doing laps of the hallway outside her room in a walker or a gait trainer. Jeff brought her stander here a while ago and she does her hour of stander time every day. We met with orthopedics a few days ago, and after an x-ray and an assessment the doctor declared that everything looks good. Her bones are structured well and in the right place. A calcium supplement has been added to her daily medications to ensure that her bones stay strong.

To the untrained eye, Maisie looks good. She definitely seems to be getting stronger. She is happier, peppier, and much more awake, lucid, and interactive.

We still don't have any estimate when we'll go home. The doctors want her under their supervision as much as possible until they find a good cocktail of medicines, so it seems we might be here for a while. Alternately, we might move into the nearby Ronald McDonald house and she will continue seeing the doctors as an outpatient. But first, I have to pass my trach care tests.

(today is day 57, btw)