Mallorie is still without the tube, but she has had a tough time this way. It almost looks as if she is having some sort of seizures, because she has regularly occuring periods of really struggling to breath with the BIPAP mask on, then she will settle down and breathe slowly and regularly, and sometime even stop breathing, ... and then will have the struggle again. She had to move to pretty high settings on the BIPAP to keep her oxygen levels up today, because I guess no one wants to put the tube back in, but it really seems like she's not doing so great with just BIPAP, anyway.
They were planning to do another EEG today to see if these periodic things are seizures going on, now that she is getting off the seizure medications they were giving her, but they weren't able to put the EEG leads on her head with the BIPAP cap in place ... and no one wanted to stop the BIPAP. There was one 2-hour period this morning when she was just receiving oxygen by face mask (a pretty high rate), and seemed to do well with that, and her blood gases (test showing how much oxygen and carbon dioxide are actually in her blood) looked OK, but at the end she had more struggling to breathe, and they said her chest x-ray looked like there might be an area of one lung that wasn't fully expanding, so they felt putting her back on BIPAP would help open that up.
Guys, I'm tired. And frightened. Frightened to leave the room for long (certainly I don't feel I should leave tonight to sleep in the waiting room), and not understanding what is going on with her. I wish they had thought to do the EEG while she was off BIPAP today, but it didn't hit me to wonder about seizures until too late to coordinate that way.
Please pray that they will be able to understand Mallorie and what is going on. And/or that she will just go back to normal!
On a positive note, my focus on her breathing makes me not so concerned about whatever infectious room we have to be in. :) Because I briefly lost it today when the nurse gave me the canned story about how they are following procedure by keeping the 3 empty rooms (that the night doctor told me about, as she wanted Mallorie not to be in the infectious room) open for some patients that "really need them." I was upset enough about it after she came from the other side of the room to this side without changing out all her protective clothing, that I felt like finding out if there was a charge nurse to talk to. But then I took a really long walk to the dining room across the street, and remembered that someone had emailed that she would be praying specifically that God would protect Mallorie from any extra germs while here, and I realized ... He can do that. So I let it go.
There's a sweet respiratory therapist tonight taking care of Mallorie. Maybe a fresh pair of eyes will help.
The Trisomy 18 Connection
1 month ago