Lydia update

Lydia’s been doing well overall. She is off oxygen about 90% of the time, she has tolerated walking and climbing stairs better, and she is sleeping better at night. Tonight she has a sleep study at Children’s, I think mainly to figure out if her episodes of shallow breathing and slowed heart rate during the night are important.

Yesterday we left her in her crib alone for a few minutes and she pulled out her trach tube and threw it out of the crib. Fortunately I heard her distress from where I was sitting about 15 feet away, and we had her breathing with a good airway within maybe a minute of when she started turning blue. We got to tell the 911 dispatcher that she was OK after all, so no ambulance this time, but now we are skittish about her ever leaving our direct line of sight when she’s awake. Sigh. This is way too much adrenaline.

Oh, and to correct my last post, I forgot to count her albuterol inhaler, so really she takes 3 meds. Still, that’s way better than when she was in the hospital.