Sunday, January 25, 2015

Screaming therapy

Today is our forty-second day in the hospital.

I'm going kind of crazy.

Don't get me wrong, I love this hospital. Our doctors and nurses are fantastic, the facilities are beautiful, and the care here is absolutely top-notch. But it's a hospital. If you ever meet someone who says they enjoy the hospital, they've never spent sixty-seven consecutive days in one (and that's just my record. That's nothing in the medical community. A NICU friend was hospitalized for almost a full year.)

Anyway, despite my cabin fever, today was a good day. Maisie is adjusting to the trach as well as could be expected. Her first day and a half after surgery were pretty rough. She historically does well with anesthesia, but she just had a hard time coming out of it this time around and there was a lot of vomiting and general loopiness. (Loopidity? Loopy-ness? I have no idea.)

The third day was really spectacular. She vomited up her dinner, spiked a fever around 8:00, sweated it out at 104 for two hours, slept for nearly twelve hours, and woke up a totally different girl. She found her voice and complained loudly and relatively coherently about the ventilator for the next hour. 

Speech therapy started immediately.

I should make it clear that Maisie is not mentally impaired. She is as intelligent and aware of her surroundings as any other five-year-old. She sometimes appears mentally disabled because she struggles with speech quite a bit. She was quite chatty as a two-to-four-year-old, in that sweet spot between recovering from her traumatic infancy and the onset of myasthenia, but her speech tapered off dramatically a few months after she turned four because she was losing the muscle tone necessary to coordinate speaking and breathing and walking or moving at all. After she started treatment, her speech improved a little bit. 

Up until November of 2014, Maisie had a vocabulary of about two hundred words. Her speech dwindled and now she has mastery of maybe fifty words, none of which she employs with any regularity. We have all been delighted to hear her complain loudly and verbosely about the trach and the vent and encourage her to yell and protest and even kick and scream as much as she wants. It's all good therapy XD

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