Desattin'

Earlier today on Facebook, I promised another update. Those quick FB posts are pretty easy to achieve. It takes a little more time, thought, and sleep to attempt a thoughtful blog post. Because one thing I was light on last night and going into today was sleep.

Zane had a pretty eventful night and morning. He didn’t drift off to sleep until 11:00. He was doing some desatting, so the nurse and the respiratory therapist were working to bring him up without putting him back on Bipap. The overall goal is to have Zane off Bipap at night in order to find out what his baseline is with co2 exchange. But because he was on oxygen only, he struggled a bit, desatting into the low 80s throughout the night. Both he and I didn’t have a restful time. In fact, my wake-up time was 4:30 when I decided to just shower and get ready for the day. Then things took an eventful turn around 5:30 this morning, when Zane’s oxygen saturation numbers dove down: 70s, 60s, 50s, reaching their lowest point at 45. The alarm went off, and the nurse rushed in—a bit panicked. She called in the head nurse. They decided Zane was not truly in respiratory distress, but was significantly congested, thereby impeding oxygen flow to his system. He didn’t turn blue or show clinical signs of trouble and, in relatively short time, he was back into the low 90s.

Jeff stayed with Zane during the day, so I could go home and get some uninterrupted sleep, and J stayed with my parents. The daytime was good for Zane where he maintained good o2 saturation on 1.5-3L of oxygen throughout the day. In the afternoon, his heart rate—which has been really high—slowed down to a more manageable level. He’s making progress ever so slowly. And his slow progression is considered normal for a kiddo with neuro-muscular issues.

We’re heading into another night now. Those are usually a little tougher in terms of congestion, so we’ll see what happens. We still haven’t a clear idea of when he will be discharged. I’m hopeful it will be sometime early this week.

Starting tomorrow, I need to begin the process of putting supports in place for Zane when he arrives home. I plan to speak with the hospital’s case worker to see if there’s a way to get him home PT and home nursing care—both of which I have tried to obtain on my own with absolutely no success at all.  Zane's case manager is useless. Arizona gets a failing grade in my book for providing in-home support services to kids like Zane. Colorado was much better at it. On the flip side, the level of expertise and medical care here in AZ seems far superior to what he had when we were in CO. Give and take, I guess.

Thanks to my parents for all of their help through Zane’s surgery and post-op care. You’re the BEST!