Lydia hospital day 50

Lydia did great overnight. Winona is staying in the hospital but got good sleep last night, ran the stairs this morning, and generally looks so lively it almost makes me tired.

I fed Lydia this morning and she ate most of her cream of wheat with strawberries, plus a little grapefruit. After almost every bite she asked for a Signing Time video. I kept telling her “OK, after breakfast. ... First you need to eat. ... I get it, you want Signing Time; first food, then video.” As breakfast went on without the video, her signs got bigger, slower and more precise, and she added “video” after a while—as if she were trying hard to be patient with a dim-witted dad.

She tolerated a hairband today (one of few times she’s done so), thanks to some distraction. I took a picture.

Medical update: During the day she is on a “trach collar,” i.e. just breathing oxygen-enriched air through the new hole in her throat. Her oxygen requirement fluctuates but at times is still as high as 50%, too high to practicably deliver at home. At night we connect her to a “laptop ventilator” (so named because of its size and approximate shape), on which she gets by fine with only a small amount of oxygen (2 L/min). The morphine and lorazepam wean continues, and she has no cough, fever, or new problems. We are waiting for Lydia’s daytime oxygen needs to taper, for equipment to be set up and delivered and for Mom and Dad to be checked out on it.