Mid-Morning Update – Sept. 30

I should honestly be trying to get a nap in right now but I wanted to share this update and I know I won’t sleep till I do.

Meg got a visit from speech therapy this morning. They sat her up in bed. It’s the first time she has sat up since she got out of the car on 9-7. She walked from the car to class and collapsed before she could sit down. It was so good to see her sitting.

She didn’t do great with the talking valve. Still very sensitive where they added the trach. This is understandable. She did do a tiny bit better than last time. I think sitting may have helped.

As a “treat” and test the therapist let her have some ice. It’s the good ice, perfect for crunching. Meg got three pieces and she went after it like she would sell her siblings to the White Witch for just one more. The therapist evaluated her chewing and swallowing. Then let her have the tiniest bit of water to evaluate how she swallowed just water.

Meg did great, but they want to keep evaluating her so she isn’t cleared for ice or water without the therapist there to monitor. However, this is huge and it may mean she can be cleared for ice and limited water by next week depending on how she does.

During rounds we got more good news. Since Meg has done so well without vent support they are taking her off vent today and switching to a trach collar. This will likely get some O2 support and/or CPAP as needed, but is so much less intrusive than the vent. Considering she keeps yanking the vent out I think she will appreciate it. I know we will feel better since we won’t have to hold her from doing it.

The doctor also wants to get more active PT and OT with a goal of getting her into a bedside chair today if she can tolerate it. If she does well in the chair they will repeat for a few days and then try to get her into a wheelchair. This will let her go visit new places in the hospital.

That made me so happy I was ugly, happy crying. The lack of sleep probably contributed but still, I can’t imagine how much better it will feel to be able to leave her room for more than surgery or an MRI. That’s going to really help her mental state. Anyway, so much good news I had to share but basically I’m falling asleep while typing, which is causing lots of typos I’m trying to fix.

Talitha cumi Megan!