Updated: Dec 22, 2018
I've been here with Julia for a while. She's been doing a lot of hand holding and cartoon watching. She's moving her arms much more, and is pointing and gesturing to things she wants. She's also started to reach up and grab onto the halo and tubes connected to her face. They were able to re-position her breathing tube to allow her to have her tiger pacifier, which is nice. She gets very irritated when anyone removes her blanket, even to just rub her legs. We assume she's just cold with the fever. Her arms and legs are so thin... I want to get this PT process started so she can start regaining her strength.
She has lots of mucus coming out of her nose, which seems weird, but I guess that's normal. So she keeps needing suctioning. She hates it when the guys in green outfits come in and turn on the loud machine, but she gets through it. I hate seeing her cry though when she knows what's coming =( She really likes the mouth treatments because they taste like mint, so she still opens her mouth for that.
As far as the plan for tomorrow... we'll find out tomorrow. Ideally they will do the trach, but that depends on what they believe is causing her fever. If her cultures and labs continue to come back negative and they believe the fever is just caused by the body's normal response to inflammation (due to surgery, head brace, breathing tube irritation, or even just the cancer), then they will likely go forward with the surgery assuming Tylenol manages it. If they find a source of infection or something, they will hold off and start chemo instead. The optimal course is trach first, and then chemo "in a few days"