After reading back throught the last couple of months of posts I realized that I only wrote the bare minimum of what was going on with Daniel at the hospital. The fun stuff is missing. The stuff that made me smile in the midst of an ordeal.
When the doctor pulled out the first drain (EVD) and Daniel started hemoraging, the doctor was using pressure to stop the bleeding. Daniel said, in his babytalk angry voice, "Docor (not a typo, the way he actually talks) You hurting me!" (I can't figure out how to spell hurting without the r sound the way he says it.) He was trying to pull away, which of course the doctor and nurse didn't let him. Then he said, pointing to the door, "Docor, you get outta heaw!" I smiled and giggled a little because I did not know he knew that phrase. The doctor and nurse looked at me puzzled and asked, "What did he say?" (That helps in explaining how bad his speech can be.) I told them and they all smiled. I know Daniel was in pain at the time, but he can be so-o-o cute! After that was over, I got to thinking about where he had learned, "get outta hear!" I think maybe his big brothers have used it a little too much. lol
He learned a new word at the hospital as well. "NURSE!"
Daniel hated that there was no QUBO on TV. That along with PBS Kids are the only stations he watches. We watched a lot of PBS. It became a standing joke with everyone that was working with him. The funniest part was that no one knows what QUBO is. I told them they need to get it. The odd thing is, I am sure a few months ago, while we were waiting for one of his MRI's it was on the TV. That is how I learned about it the first time. Now it is over the air, which is what we have. The hospital has cable. I guess it isn't on the basic cable stations.
Daniel's school teacher was absolutely fabulous during the whole thing. She, the school nurse (whom I have known and worked with for the 10 years we have lived here), and Daniel's school speech teacher came to visit him in the hospital. His teacher had the kids make him cards which he laughed and smiled about when he was in the most pain. When she came to the hospital she brought a poster that kids had made smiley faces for and signed. I put it up in the window. He loved it. Then, after we got home, she had the kids write a persuassive letter (they were learning about these at the time) to the principal to persuade her to let the kids take a field trip to our house to say hi to Daniel. The principal wrote back asking for details about who would go with them, how far it is, and how many streets they would have to cross. They wrote back explaining that it is one street and about 0.2 miles from the school. (We live really close.) I guess the principal was getting the OK from the school district as well because it was given the go ahead. I couldn't believe it was OKed. No one really thought it would happen. Daniel's teacher told me that the kids were really good when the principle told them they could go but the minute the door closed they errupted in a cheer. Daniel is beloved. She said the principal stuck her head back in the room for a minute.
Daniel was suppose to come back to school the next week so they had to hurry and get permission slips and set it all up for the next day. Can you believe that they got all the permissions slips back in one day? They did and the next morning (the only day it wasn't suppose to rain that week) they walked to our house in 45 degree weather. That may not seem very cold, but we live on the gulf coast and most of us do not have cold weather gear. They rang the doorbell.
Because I new they were coming, I had Daniel open the door and the kids all held up paper plates they a decorated that spelled out "Daniel we love and miss you," (I think).
Then they all gave him a hug and had cookies the teacher had made. They had a couple of parents and teachers along. It was wonderful for Daniel and amazing to me. He was really happy and surprised. They only stayed about 10 minutes, but it brought a lot of cheer to us.
That, along with the stack of decorated hearts we got from the kids at church (there are about 100 of them) really helped us feel loved and cared about. Having a child go through this is difficult, but when you have friends that care about you, the load is a lot lighter and easier to carry.