Today was day 2 at the General Hospital on the video EEG. It started with an extremely cold morning (40 something outside!!!) and the air conditioning blowing full blast in our room. Normally this wouldn’t be too big of a deal, but there are strict rules when getting a video EEG. The most important is to stay in the camera’s line of sight at all times, next is to not use any covers – ever. So after sleeping all night in this chilly room, Rosalie was like ice when she woke up.
I saw no seizures at night, and believe me – I would have seen them since I was so on edge that I pretty much stayed up all night. I think I got about 3 hours of sleep. This morning I woke Rosalie up early, knowing that they were going to want to sleep deprive her. She was exhausted. It took nearly 5 hours, but they finally fixed the a/c. It had been blowing full blast and had cooled the room to a whopping 65 degrees. Rosalie was in shorts, a t-shirt, and soaking wet from a pull-up leaking. She had goose bumps over every inch of her body. I felt so bad for her.
I made a plea for help on Facebook and within a few hours Rosalie had three sets of new PJ’s! And a few activity books, crayons, and a big bag of apples (her absolute favorite). The a/c broke again one other time, but we survived.
Her favorite past time (besides vegging in front of SpongeBob) is playing with the Squenkies. They are these itty bitty teensy tiny rubbery animals that come in their own balls. She can play with them for hours – and silently for the most part.
Today, I pushed the ‘event’ button 5 times for brief staring spells. She was so tired today though that I don’t know if those were actually seizures or not. I am praying that she has a good representation of all the different types of events that we see on a weekly basis. I am praying that this video EEG will not be a complete waste of time. I am praying for a miracle here – a few really good, definitive seizures with total protection of her brain from lasting effects. It sounds so weird to be praying for seizures to strike, but I know for a fact that these seizures will hit sometime – maybe even on the way home from the hospital. So I would much rather they hit during our stay here and the neurologists would be able to pinpoint exactly what is going on.
Last night they took her off one medication. Tonight they took her off another. She is only on one anti-seizure medication right now. Rosalie has been taking Trileptal for nearly 6 years. They have just quit it cold turkey. Tomorrow they will give her a very minimal dose and start weaning her off the last medication. This is how they evoke a seizure response as they are working to capture seizures on the EEG.
She is being sleep deprived right now as I type. It is 1:10 in the morning. She is watching Toy Story 3 for the second time. I am the one who feels deprived – after 3 hours of sleep last night I feel like a mac truck has run me over. I don’t know how I will feel when I have to drive over 2 hours home in a few days!
Thanks to all of you for your prayers of support. I know God answers prayers. He loves us and cares for our situation. Rosalie is quite happy here at the hospital, and I am enjoying having time to sit with her and play with her. She runs extremes between LOUD and very silent. She cracks me up because she is always asking for food, but is so picky! I thought it was textures or taste, but over this past week I have realized Rosalie is extremely smell sensitive also. The apples they brought us the first night smelled like flowers and she refused to eat them. I specifically watched to see if she would smell her lunch and dinner – most of the time she did, then made the yucky face and refused to eat it.