Tues. update on Preston

Hi, I am just on the computer now for the first time since Sunday. Sunday evening when we had company Preston was smiling, and even said "nineteen" when we were talking about how old he would be on June 20th. We all clapped when he said it. Then when they got ready to leave he put up his hand so they would shake it. I was so encouraged, but then about 10 p.m. he had a seizure It lasted over 7 minutes. They always wipe him out because they have to give him extra meds. to stop the seizures. They gave him 2 extra doses of seizure meds. plus ativan. So my hopes were dashed again. Every time he takes a step forward he seems to have to take 2 backwards. My heart breaks for him when I see him lying in that bed not able to do hardly anything. He does smile at us some, though, and I love to see his smile and his eyes looking at us.
Last night at midnight he had another seizure, started to come out of it, and went into another one. They ended up giving him more meds. to try and stop. His heart rate went up high and his oxygen sats. went down and he had to be given some oxygen and it just came off tonight. Needless to say, he has been wiped out today and has slept a lot. The CT scan from Monday showed fluid on the brain. So we have been waiting to see when they will do surgery to internalize the shunt. The ICU floor dr. and infectious disease dr. say he needs to have it done. I waited all day yesterday for his dr. to come in and finally one of his partners came in at 8:30 last night and said he wouldn't be back until today. When I left at 7:15 he hadn't showed up yet. I want the surgery done asap. We have to get Preston back on the road to recovery and soon!!! Just pray the shunt will work when he has it put in and also that he won't get another infection. It has been and will continue to be a long hard road for us all. It hurts me to see him like he is. He cannot eat, talk, get up, or anything. He even forgot how to cough and that is so pitiful. All of these things should come back in time. He did say yeah to the nurse today, and yesterday it sounded like he said momma. He tries to talk. When he gets agitated I sing to him. I sing, "You are my sunshine" and "Amazing Grace." It seems to help calm him down, and I cradle his head in my arms and rock him as best I can. I was rocking, and praying, and putting cold rags on his head during the night when he had those bad seizures. He has never had seizures like this before. I know it must be so scary for him.
Please pray for us. I have been discouraged today. It is hard not to be when you have been in the hospital for over 6 weeks and he is not better, in fact he is worse.
Well, that is my update. It will probably be Fri. before I get to do another one.
Please keep praying for us.

Norma Gwen