Lydia hospital day 59

Lydia has been gradually doing better. Last night she was breathing room air again, off the ventilator, for an hour. Ditto this morning. However, any exertion and her oxygenation starts to drop. When she’s asleep she goes back on the ventilator to help keep her lungs expanded. She is getting stronger. She is standing up for prolonged periods of time holding the top rail of the crib, or crawling. She is still her usual charming, winsome little self, enjoying most people, many foods, some toys, and her Signing Time videos.

The plan is still for her to come home Tuesday afternoon after an electrician does some work that morning (her new equipment uses over 16 amps) and a visit from the home health people to inspect the setup.

Last week when I was riding the elevator I saw a mom with a “PICU” name badge, and I was trying to be friendly with something like, “We were just in there. Our daughter ‘graduated’ last week.” The mom congratulated us on that but added, “Our boy’s not going to make it out. They can already tell.” Wow. I mumbled something that tried to be supportive, but I suppose there is no good answer to that. I felt totally insensitive. But it reminded me how very blessed we have been and how far she has come from 2 months ago when we weren’t sure she would make it out of the ICU.

Thank you to Klixi and Jen and Amy and probably several others I’m forgetting, for all the help this week. Belated but heartfelt thanks to the Welches—John and Rosalynde but also Elena and the younger children, for the wonderful support all through.