The last 24 hours have been a roller coaster for all. I will get to the punchline and then work on elaborating.
She is doing better but not fully out of the words.
The floor move
We moved from the 20th floor to the 16th floor around 7:00 pm. This occurred after the reboot she got from Ativan. it was an amazing thing to watch play out. If you ever saw the move awakenings with Robin Williams it was very much like that. A shot and then her eyes opened and she was able to speak.
During the move I witnessed her relapsing to a non-verbal state. The rattle of the tracks of the roller coaster cars stops and we went into free fall.
Throughout the night, we have had to keep the bed alarm on. Each need for the restroom involved carefully handling the heart monitor equipment, the oxygen tube, and her IV while rotating her to the bedside commode. All while holding her up as she was so weak and could not stand.
The good news is we survived each round. She regained her strength and by shift change she was able to fully stand on her own and rotate to sit on the pot.
Test and more test
She was back into a mostly non-verbal state. It was different than the night before. We kept all the lights off and had gentle music playing all night. By the morning came we heard that all the test were coming back clear. No blood or swelling in the mri and the blood cultures were not showing signs of infection.
We knew that the one place that had not been tested was the spinal fluid. For MD Anderson, lumbar punctures are normal but the ommaya port is not. The first procedure orders and the last procedure done. it even included a brief moment where they had to hunt for clippers to shave her head.
Towards the end of the day they came back to do the EEG follow up. By that time, we were happy to see that the signs of seizure were not present.
After the doctors visited earlier in the morning they increased the antibacterial and antiviral dosage. By my best observation, this is the common denominator of what we saw throughout the day.
It was around 1:30 that a doctor stopped by and began the normal cognitive questions. This time she was different. Her eyes were more open. Her voice was more clear. She still had to “rest” and confused a few things. I was in tears with joy. All morning all I saw was her slipping back into this catatonic state. The amount of help she needed for the restroom was emotionally and physically hard.
Progress was good. The EEG looked good.
She is hot out of the woods and certainly not fully normal. They pulled 17cc of spinal fluid and are looking y for anything they can think of.
We won’t know the results until probably late in the morning. She was still restful. Certain topics she should be in tears. Crying. Sad to be in this situation. Scare of what it could mean.
Linda arrived at the room at 6:00 and we talked to get her caught up. I woke her to let her know that I we going to go to the hotel room Linda reserved for the night. As I left the room she was crying again as she said hello to her sister.
A shower and dinner and then bed
I showered shaved and …
I am now waiting for my food.
MD Anderson had a hotel attached to the center called Rotary House. You have to be a patient or relative to stay here. You can walk a labyrinth of hallways to get between the hospital and hotel without ever stepping outside.
I think the design of the hallways is to not have any long straight halls between two obvious points at all cost. But I made it!
It is like a normal hotel. The restaurant and bar are full of laughter and conversation. Eventually. Someone says they have to go because they have an early appointment. Everyone bids their farewells. New friends are being made.
I want to thank so many of you for the enormous out pouring of prayer and support. You are noticed. In all our tears over the last 36 hours I know we were not alone. We proceed cautiously and as we look around we know who has our back.
I am tired and heading to bed. I just got a report that she has been sleeping as well. Our bodies must heal now.