She never stirred as doctor after doctor came to look at her, and despite the jostling of her bed and the noise of the hospital as we left ICU. We made it to our new room and met all the people that would be looking after her. The ICU nurse made sure that the staff knew what had been going on, and even pointed out that I had yet to really sleep and that I had not eaten that morning (guess they didn't want another patient on their hands). I was on the phone constantly with Jeff to let him know where we were and to coordinate the day, and with family and friends who heard Norah was sick.
I talked to our pediatrician the night before (who was shocked by the whole situation) and she went over with me everything that they were likely to do. She reminded me that she is not a specialist, but that she knows Norah, and encouraged me to call if I had any questions and she would continue to review the reports as the hospital sent them. As a result, I was not surprised by anything the neurological team had to say in regards to Norah. However, they were concerned by how lethargic she was, even when taking into account a sleepless night, a 30 (plus) minute seizure and all the medications in her system. To be on the safe side it was determined that they would redo blood work and cultures as the originals were not showing anything, they would redo the CT scan, do an EEG, and if it became necessary they would do a spinal tap.
Norah was awake enough by the time they came to get her for the CT scan that she got to ride in a wheel chair. She held my hand and carried Scruffy in her other. She did a GREAT job and held still long enough that they were able to get us in and out, surprising everyone with how quickly we were able to get it done.
On our way back to her room I saw Jeff waiting for an elevator, so he was able to walk back with us. Norah was relieved to see her daddy and thrilled to have Heart Bear at her side. She asked for Heart Bear, which we bought for her first Valentine's Day, and her daddy the night before and cried when I told her they would be there in the morning (it broke my heart to hear her cry, especially since her voice was still scratchy from the tube).Once back at the room I went over everything that had happened, took a couple more phone calls, and was just about to order lunch when they came to get Norah for her EEG. Norah was put in another wheelchair and taken to another room, where measurements were taken of her head, about 40 sensors attached, and information was displayed on a monitor. Jeff and I talked to her to keep her calm and still so that the machine could take it's readings for 40 minutes. I laid down next to her and Jeff held her hands as I told her stories and she introduced him to Scruffy and Scruffy to Heart Bear.
With that test out of the way, we were taken back to our room at which point I was able to shower while Jeff kept Norah occupied. We were about to order lunch again when we were informed that they had decided to go ahead and do the spinal tap. Her white blood cell count was down and they wanted to eliminate several possible infections including meningitus and encephalitus. Several doctors and nurses came to talk to us about it, what to expect and all the worst case scenarios which made us crazy. They gave us the option to not be present, but we explained that we wanted to be there for her and do what we could to keep her calm.
They put an anesthetic on her back to numb it, then we headed to the room with a group of people. We were frustrated by the time it took for everyone to get situated because the longer they took the more upset Norah got. It was evident at this point that she was tired and overwhelmed by the tests and the environment. She was anxious and made numerous attempts to squirm off the table, each more forceful than the previous. Jeff sat down on the stool next to the her and wrapped his arms around her. As the procedure started I wrapped my arms around her too. She wanted to make a run for it, but Jeff explained that they weren't going to hurt her, they were trying to help her. She became more agitated as it became evident something was about to start, and reassurances weren't helping, so Jeff started counting. It seemed to calm Norah so I joined in and we counted together to 100. Then started counting backward (at which point I got confused and started messing up) but didn't have to go too long before it was over. The counting was an effective distraction and masked the duration of the prolonged procedure. It wasn't a 1,2,3 ouch or a this will be over in 10 seconds kind of thing, it was open ended and could last as long as the procedure. She held perfectly still despite her concerns or discomfort, it worked like a charm. All the doctors and nurses complimented us all on how well it went but we were too focused on our baby girl to really listen.
By the time we got back to the room I laid down with her on the bed and closed my eyes. Jeff took some calls and talked to the doctors and nurses that came in to check on her. We ate lunch (it was about 5 PM at this point) and spent the next two hours cuddled together sleeping and watching Scooby Doo.After dinner we talked about it and decided that I would go get Justin (who spent the day at Dominika's playing) and go home. I was desperate for some real sleep and we were uncertain how long she was going to be there. We were told anything from Wednesday to all week. I arrived at Dominika's around 9, picked up Justin (after giving him a big hug) and headed home. Once home I called the hospital to let Jeff know we were home safe (I was getting punchy) and to let Norah and Justin talk to each other.
By the time I got Justin to bed it was after 10 PM and he thrashed and cried in his sleep for the majority of the night. Needless to say, once he finally settled down, I crashed. 
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