Lydia video #2

This morning at the hospital, Charissa took a video of Lydia, Rose and herself, singing one of Lydia’s favorite songs while Lydia signs some of the words. (Vertigo warning: handheld camera with frequent, sudden direction changes.)

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.

Lydia hospital day 55

Lydia has been doing well breathing on the ventilator at night with a modest amount of oxygen (1-2 L/min), and doing all the work of breathing herself during the day with the help of more oxygen (~40%). Yesterday Dad was supervised replacing her trach tube with a new one, and Mom, Dad, and the 3 school-age kids got trained on CPR and rescue breathing for a child with a tracheostomy. (“No, Mr. Black, the first rescue step is not to ask ‘so, how do you feel about breathing?’” ☺) This morning, for the first time in almost 8 weeks, Lydia was breathing 100% all-natural, genuine air all by herself, without help from a ventilator! She kept it up for an hour or two and now is on a trickle of supplemental oxygen. Today Lydia will be checked out on a valve that lets her talk around the tube, if she can tolerate the extra work. She is gradually getting stronger, but still she can only stand for 5-10 seconds with support before tuckering out.

Overall, all of this is very hopeful and the tentative plan is for her to come home a week from today. I think it is pretty amazing that in our ward (congregation) at church we have one RN who works on the pulmonary floor at SLCH, one RN who used to work as a home health trach/ventilator specialist, one member who grew up with a trach, and a couple of ENT docs who do tracheotomies all the time. Call it coincidence if you want.

A special thank you to Amy Parent, who has been simply amazing organizing a cadre of loving volunteers into an efficient support system!