It was nice, she trusted me to take care of her at the toilet, and let me take care of her in the bath. I let her bathe herself, at one point she asked me to shave under her right armpit as her left arm was weak. I told her she was the first armpit I ever shaved, she laughed. I washed her hair the best I could, which is still terribly matted. I rinsed it and put in a bunch of conditioner, which I left in. I hope it works.
I dressed her in pj bottoms (first time in a while out of the hospital gown) and one of my oxford button-down work shirts. She looked cute and seemed settled. She started to nap, but woke up and had a melt down (see previous post). A first for me though she has had several for her mother. Eventually she fell asleep and I played on the computer. She woke about 11:30 needing to use the bathroom, then went back to sleep.
Around midnight she started to have seizures. They weren't her usual ones, mostly her left arm moving up above her head and sometimes a twisting of the wrist with a downward motion. Her right leg would move, but more in reaction to what she was feeling in her left leg (according to her). Her nurse Chrissy had just left and her new nurse Allison was coming on. I had a difficult time getting a response to the nurse page, so I hit the staff page button on the wall. Why the attendant answers, I still don't know, it is called a "nurse call button" for a reason, right? Anyway, one of those things, like the monitors in the room.
Eventually, we get some attention. The resident puts her on 2 mg of Adavan , says the neurologist ordered it and wants a CAT scan to check to make sure there is no bleeding. I suggested they put her on a portable EEG video monitor, as these are unique seizures. She said they want to check for bleeding with the CAT scan, then they will knock her out for the night and address the seizures tomorrow. I said it sounded good to me.
She continued to seize. Through the CAT scan (which came back normal), after the CAT scan, and back in bed. I said to the nurse that I wanted to see a doctor, these were atypical seizures and the Atavan didn't seem to be working. At that point everyone seemed to disappear. I don't know if they were huddling, trying to decide what to do, calling the attending neurologist, or what. But I was getting pissed. I hit the staff call button again and told the attendant I wanted to see a doctor in my room. When the resident came back, I asked her point blank what the fuck was going on? I said that these seizures appeared to be grand mals that were not fully developed because part of her brain had been resected. I was not comfortable with her having seizures on and off for an hour straight and I wanted her knocked out.
This went on till about 2:30. They kept telling me they were following protocol, increasing her dosage in steps, and there was no way they could go any faster. I suggested that a Klonapin wafer in my experience seemed to always knock her out. When we were in DC over the summer, after 3 grand mals they dosed her with something and it shut her down immediately. Nothing they were doing seemed to be working. I called Sandra, as I was getting panicky and felt I needed some support. Sandra was smart, she called Susan to drive her down. Otherwise she would have flipped the car on Lincoln Drive. All the while I am asking where the neurologist is on the floor, they said they had him on the phone. Why wasn't someone on the floor? No attending, not even a fellow. I am not happy with them "phoning it in" for my child. I asked them if she needed to code before we got someone who could manage her first hand?
Around 3:30 the ICU team showed up. A resident, a respiratory therapist and a fellow. The fellow had it together, or at least he talked a good game. That was the time we realized we were missing a neurology fellow on our neurology floor. Anyway, the ICU fellow explained about the phase 1 and phase 2 treatments, he took a blood sample to check that she wasn't seizing due to a sodium deficiency (which diminishes the effectiveness of AEDs - Anti-Epileptic Drugs). He noted that the third phase of treatment would involve Phenobarbital, which could limit her ability to breathe, so they would monitor her, be close by, and ready to take her in the ICU if necessary.
Now it is 4:30, she has 8mg of Atavan in her, another drug that was supposed to calm her, as well as Phenobarbital. Which finally did the trick. Sandra and I are exhausted and scared, but together. At this point, the only good news I have is that it is now Thursday and the PREP team meets at 1pm on Thursdays.
No comments:
Post a Comment