Lydia hospital day 62 ... Homecoming!

Hooray! We have worked with the hospital team, the ventilator nurse practitioner, our home pediatrician, the home health agency, an electrician, cardiology, pulmonology, the pharmacy, audiology, and some family-members-turned-stevedores to rearrange Lydia’s room. We have an oxygen tank, tubing, a portable pulse oximeter, a heat and moisture exchanger (“artificial nose”), an emergency kit, portable suction, and lots of disposable stuff. The final inspection of our house and final training session on the new equipment began about an hour ago. We are scheduled to bust Lydia out of SLCH at 2p.m. today.

To celebrate, she rejected her grapes and even her pancake, fussed over her chest PT treatment, spit out her Ativan twice, refused her pants, socks and shoes, and interfered with her blood pressure measurement. But she ate her scrambled eggs and took her other meds. Hey, she’s 3 now, so I suppose she’s acting like a typical 2-year-old.

We can’t wait to see her safely installed at home. Most of her new medications from the hospital will be stopped by mid-April, and by the end of May we will have a good idea of how completely her lungs have healed and how long we can expect her to need supplementary oxygen.

Thank you again to all of you who have prayed for us or helped us in one way or another. Hooray!