·  Normal is a dryer setting.

sleep study

Ignoring the observer effect

As you may or may not recall, Namine recently had a sleep study at the hospital last week. The techs stuck wires and glue in her hair and told her to go to sleep, with the hope that this would be a decent indication of how she sleeps at home. And I can’t help but…

Sleep study

Namine had a sleep study last night to observe her restlessness. The goal, of course, is to get her to stop rolling around as much, so that she gets better rest at night. But like Heisenberg, we know that putting leads and monitors on Namine interferes with normal sleep; as a result, she only slept…

Redefining comfort

For some time, Namine has tossed and turned in her bed. We went mattress shopping last week with the intention of finding something more comfortable, but the solution ended up being much simpler.

A good night

Last night, Namine slept through her third trachless, no-help-from-oxygen night, ever. The first night was in the hospital, the night after the day of decannulation. The second was the following night, at home. After that, she got sick. She spent time in the hospital again, because she was sick. She came home, she got better, and now I can really say she’s doing better.

Namine’s trach removal is tomorrow

I don’t think I can get any more straightforward than that. Most of you reading this have probably been following Namine’s progress pretty closely; I try to keep the blog updated regularly, even with as crazy busy as we are. But for anybody not in the know, Namine has had a tracheostomy tube for two years. She was a mere two months old when they put the trach in because she couldn’t breathe on her own. Her airway was too small and couldn’t handle it; she had a cleft palate, and her jaw was not developed enough.

Much news

Happy horse day! Today Namine had equestrian therapy, and Jess said she enjoyed it quite a bit. I’m told the benefits will far outweigh her smelling like a horse. I kid, I kid. But on to other serious matters. Namine also had a cardiology appointment, and I got a call from pulmonology about her decannulation. We finally have a set date, and it’s coming up soon. More after the jump!

Decannulation is a go

As Jessica posted earlier, Namine passed her sleep study. This means one thing: decannulation! The next step is to get Namine better. She’s still coughing and hacking quite a bit, and she needs to be fully recovered before they’ll take out the trach.