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!