We all left the hospital last night around 9. We learned we weren't allowed to sleep in the room, and there was no designated area to stay. Certain waiting rooms closed at various times, so it sounded like we would be shuffled around all night long. Since Leslie was so deeply sedated, we figured it would be best to just go home.
I promised everyone that I would call the hospital around 2 AM. George and I are the only people who can call to get information on her. It is our job to relay it to the rest of the family. At 2, I called and spoke to the midnight nurse. She said there were no significant changes. She had not had any more seizures. Her heart rate was no longer in the 120's-130's...now it was more like 110. They were slowly weaning her off the propofol, too, to see how she tolerated it. The nurse said that as soon as Leslie was awake and following commands, the would likely take her off the ventilator.
My parents and George got back to the hospital around 6. I couldn't be there until closer to noon. I had felt okay all morning. I had even repeated the story to several people over the phone without crying. When I got to the hospital at noon, the tears started. I just could not believe this was happening. I tried to talk to her and I was holding her hand. She wasn't responding to me at all, and that just shattered my heart. I wanted to know she was okay. I kept begging her to somehow let me know she was in there.
I stayed a good 5 hours. They did a repeat EEG so we all had to step out for about an hour. I left when they were getting ready to do a lumbar puncture. I am home now with my family, but I plan to go back up there and take the first shift of sitting at her bedside. George will be there, too. My parents will come up around 3AM and take over for us.
She started to slowly and gently move her head. She never opened her eyes, but the nurse said she moved both of her arms when they did a sternal rub on her (a sternal rub is where the nurse takes 2 knuckles and rubs them hard on a persons sternum). She also reacts when her nail bed is pressed. She doesn't react to blood draws or blood sugar finger sticks. Her pupils are both reactive and she has a gag reflex, so that is also good.
Right now she has the ventilator in her mouth, an NG tube and thermometer probe down her nose, an arterial line in her right wrist, and a peripheral IV in both arms. She also has a foley and cardiac monitors on her chest. She has large burn marks on her chest where they used the defibrillator on her at the school, and she has scabs on her temples and forehead from the EEGs. Her right hand is quite swollen, along with her feet, but nothing too major. She is wearing a boot on her right foot to prevent foot droop (where the muscles in the feet become really floppy from being in bed) and they will alternate feet every 4 hours. They bathe her twice a day, just to make sure her skin isn't breaking down, and after the lumbar puncture, they are starting her on tube feedings to give her some nutrition.
She is stable, but critical. Her vital signs are good and she appears very comfortable. She is getting Dilantin (an anti-seizure medication) every 8 hours, IV fluids to hydrate her, and antibiotics. They also have to give her insulin occasionally (she isn't diabetic, they are just watching her blood sugar very closely) and her electrolytes have been a little off, so she has received potassium, magnesium, and phosphorus.
I will update as I am able. I did take some pictures of her today, just so I can show her when she wakes up.