Evening Update – Sept. 29

Meg has had a mostly low event day. Despite that, we’ve had a lot happening. Meeting with the doctor over PT and talking plans for the various therapies she will be doing and inpatient therapy in the future.

Also talking about three different procedures including her auto defibrillator, a new, more long term connection for dialysis, and a more long term feeding tube.

She has also been running a moderately high fever again. They did cultures and are starting her on antibiotics but not until after dialysis, which is about 2 hours late now. At this rate she will be starting when they should have been finishing.

Meg is also fighting her vent tube. She is down to minimal support including pressure. She may be off the vent and on O2 or slight pressure in a day or two.

She keeps pulling it off and it’s frustrating her and us. For whatever reason she has decided to skip it, but she can’t quite breathe on her own.

In some good news, they did PT with Meg today and she was moving her toes for the first time and made controlled movement in her foot and knee that she never did before.

They also got speech therapy here and tested a valve that would let her talk. I think Meg was disappointed she didn’t get full speech right away but she got some sounds out. It’s very different and triggered a lot of coughing but she actually did really well according to the vent tech and speech therapist. I talked with her after and she seemed excited because we heard her voice, even if it was just a couple vowel sounds with a lot of coughing.

Talitha cumi and your beautiful voice too.