I'm way behind on updating everyone, and life has been overly tiring lately, so I'm going to cheat and use e-mails that my mom sent out to my immediate family during some of the recent drama. I'm sorry for not getting this done sooner, but the few spare minutes I've had to myself I've spent keeping myself sane and not worrying about this here blog... Hopefully life will calm down at some point and I'll be able to get back on top of things. I'm not holding my breath though, so I recommend you don't either :)
Fri Oct 19th:
Hi All,
I arrived in Utah late last night and found Rachel, Katie and Doug all on Rachel's bed talking. I took Nikki from Katie and joined them :-). We talked about Mark and when I asked how he was today Rachel said that he knew who she was. She then said, but to understand that you need to watch the video of Mark that I took.
Rachel handed me her phone so that I could watch. Mark was sitting on the couch with a back cushion from the couch in his hands. His was repeatedly trying to unzip it, then zip, then unzip.... He turned it over and around in his hands. When Rachel asked him to zip it up, he just looked at her blankly. After she repeated it a few times, he did so. Then she took that cushion away from him. Mark immediately picked up a smaller pillows from the couch and checked the edges, turning it over and around looking for a zipper and checking out the seams. Rachel asked Mark what day it was, what year is was, who was the President, the names of their children.... and Mark just looked at her blankly after each question.
Then Elaine came into the room and stood in front of Mark. Rachel asked Mark who she was. Mark stopped picking at the pillow and pointed at her. Rachel said, I didn't ask where she was, but who she was and again Mark pointed at her. He was unable to answer any questions, but he did seem to recognize his mother. Rachel said that this went on for about an hour.
Rachel then explained the seizures the way the doctors did. There are 2 parts to the seizures, the 1st part is the seizure itself. Mark has had the seizures with others in the room, but no one has realized it was happening when it happened. The 2nd part are the after effects - fidgety, unresponsive, non-verable, blank stares.... - which can last 30 - 60 minutes.
The doctor said to think of the 1st part like a wildfire and the 2nd part like trying to move into a burnt down house. A spark causes the seizure which is like a fire going crazy in your brain - this lasts from 30-90 seconds. Once that part is done, your brain is like a burnt down house and the second part is the person trying to figure it out, make sense of it and deal with it. The anti seizure medicine is like spreading fire retardant everywhere to try to stop the spark from igniting and starting the fire in the first place (we think the swelling in his brain set up the perfect conditions for a 'fire'). Dr Rich also started Mark on steroids again, to help with the brain swelling - he said that he hoped that would stop the spark from even forming. They expect Mark to be on anti-seizure medicine for at least a year.
We finally stopped talking at 11:30 and all went to bed (Doug left) and I got to be in charge of Nikki during the night - such tough duty :-). In the morning Rachel left for the hospital early, hoping to be there when the doctor made his rounds - she guessed around 7am. I slept in the front room with Nikki, who Rachel took with her - and I heard the kids getting breakfast sometime after that, but I was able to go right back to sleep. I did get up later and enjoyed watching the kids play their pretend games in the family room!
Katie and I decided to take the kids to see Monster's University at 12:30. Annie fell asleep on my lap and Emily liked to hold my arm and wrap her arms around it. When the good team won the competition, Jason's arms shot up in the air while he yelled YES!!!! A little later, during a scary part he said that he didn't want to watch the movie anymore, so I invited him into my (by then) empty lap and he was just fine.
After the movie I left Katie with the kids and headed to the hospital to visit Mark, Rachel and the Schofield's - it didn't hurt that the BYU football game was on and could be seen at the hospital :-). Mark was awake, alert and knew who I was. He was able to carry on a conversation with the nurse who came in and then shortly afterwards was getting his words mixed up, inter-changing beginning sounds of words and even making up words. His language and attentiveness went in and out and up and down.
Elaine pointed out that Mark doesn't like to be touched, except by Rachel. Rachel suggested warning him and asking permission to touch him when helping him get out of bed. Lamont told me that he was rather concerned about Mark and hoped that he wouldn't leave the hospital when he was still so confused. A little later Mark told Rachel that she had letters in her hair. When she asked him what he meant, he pointed to the top of her head and said that there were letters there. When Rachel asked him what the letters spelled Mark said Michelin. When Lamont said "what did he say?" Rachel responded that she had a tire company's name on her head. The nurse was in the room during this time and asked if Mark had been hallucinating before this. Elaine said that Mark told her there was a man in the room the night before - when no one was there. The nurse made note that Mark was hallucinating - I don't know if the staff and doctors knew that before. Lamont asked the nurse if they would send Mark home when he was still like that and the nurse said no.
Elaine and Lamont left the room during half time and Rachel left to go to the bathroom. Mark and I had a good conversation at first, but then he started mixing up and making up words and telling stories than weren't real. He was in a good mood, just not quite himself. Elaine and Lamont both told me that it is hard to see him like this. Mark got up to the use the bathroom and then the physical therapist came in and had Mark walk down the hall for a bit. Mark was doing okay, a little weak on the left side, but not bad. Then both Rachel and Elaine saw a small difference in how he walked and that he didn't look at Rachel anymore. When Mark got back into bed he was really flushed - which is what happens when he has a seizure - so they think that is what made the difference on the walk.
I was encouraged when the physical therapist was working with Mark and he was able to move both arms, both legs, both feet..... After surgery he wasn't able to move both, so I was glad to see that he hadn't lost that ability. Mark has some moments when he is doing great and other moments when he seems confused and dazed. I haven't seen the non-responsive (except on the video), so hopefully they are getting the medicine to the right dosage to help and not make him sleep all the time.
I left the hospital after the game, bought pizza and went home to eat dinner with the kids. Katie had a ward Halloween party tonight and took the 4 kids with her. They had a BLAST (but don't ask Jason, when he got home he said it was boring!!!!). While they were gone I emptied the dishwasher, filled it again, washed some dishes and then cleaned the playroom. All in all a good evening all around. Katie is now reading to the kids.
I don't know when Mark will be released from the hospital, but I thinking that I should stay at least until he comes home. With Mark in the hospital, Rachel and his parents want to be with him and I would be helpful at home with the kids - especially if it goes into the coming week. So we'll see how Mark progresses. Right now I have a plane ticket to fly home on Monday night, but Lisa said that I would be able to see in their eyes if I needed to stay longer and that I should if I needed to :-). Everyone at Meadow Park is telling me that family comes first, so I'm here at least as long as Mark is in the hospital. Hopefully the clerk who has had the job for 3 days and the principal that subs for Lisa when she is gone can hold down the fort :-).
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