Walking out of the elevators from the parking lot, I had to pass a medical screening to be permitted into the rest of the hospital. They are taking this very seriously.
Bella continues her new norm – playing with her vent settings, desating here and there, and having episodes of brady and trachy – but recovering from them.
The plan for the weekend is to try and let her ride it out and not do much to her. On Monday the Pulmonologists want to talk to me about Flovan. I’ve been hoping we could avoid it, but I guess not. We’ll see on Monday.
Our one day of nothing major (or are we just getting used to this new norm) has sparked a glimmer of hope. This morning I dreamed that Bella was propped up on pillows, we took out all of the tubes, she opened her eyes, looked at me, and smiled. Heaven.
Yesterday I was able to talk to Joy’s therapist about Bella. We talked about what kind of services she would receive. We talked about her room. It felt so good to be planning for the future – a good future. On Wednesday, the doctor and I talked about dying. I just needed to know. He acknowledged that she was on that path if she didn’t improve. BUT he told me, the team has not discussed it, which means we aren’t to that point yet. Thursday she had a more stable day. One glimmer, I’ll take it!