Thursday, June 17, 2004 8:51 PM CDT
Hello - well - 1 day left thank goodness. Today was terrible. His IV actually worked so that was the good part. We waited around forver before he got started and the boy in the other bed (we have had one of the two rooms with 2 beds and no windows for 2 weeks - I don't know why we won the bad bed lottery) had his pain and it was really bad and we had to listen to the whole thing as I tried to read to Nathan. Nathan asked for his dilauded (narcotic) early. He likes it now..I think he is starting to enjoy the high from it. Well - she gave it to him far back in his line so it was not immediate or a strong rush and that upset him. By the time the pain hit he was still mad about the dilauded and so he was in no state to control his pain so he was screaming and yelling. We gave him an extra dose of dilauded which finally knocked him out some, but I was not allowed to move. I left the room for a few minutes and he woke up and had a huge fit. I couldn;t hold his oxygen just right or have my hand on his leg just right. If I tried I ended up in some contorted painful position that I just couldn;t hold for too long. He was just mad mad mad and cranky. He slept for a little and then woke up. He had a Pepsi which Mike threw away as we were cleaning up to leave and Nathan freaked out and was completely unreasonable about it. Mike went to get another and Nathan was just screaming and yelling. Mike went to get another Pepsi. We tried to get his shoes on and he as kicking and screaming. I finally carried him out as he struggled and screamed. Julia saw him like that and started crying and so she and Kathy went on downstairs and I put him down to talk to him because I wasn't going to let her see him like that anymore. That is the point where I started crying. Unfortunately in the screaming rus Mike left Pepsi #2 in the room. He ran back to get it and they had already pitched it so there was another big fit. He finally calmed down enough to leave and we came back to the apartment. I called Luke to come down from working and I took off and had lunch and a pedicure and manicure. Nathan was very good for Luke and by the time I returned I was able to be with him again. We had a good dinner and he went to bed happy.
Having to deal with him like that is the hardest thing I have had to do - and I have had to do it repeatedly during the past year. I keep thinking that if I lose him I will feel guilty for all the times I just couldn't stand to be with him. I am so drained after these days that I have no energy for Julia. I feel like she isn't going to have the kind of connection to me that she should. She must think I love Nathan more that her. I tried to play with he yesterday and Nathan just ruined it by trying to dictate how she should play. So I had to discipline him even when I was trying to give her attention. I just feel so useless.
I can't wait to get tomorrow over with. I am not sure how well I will be able to deal with him as I am still very raw from today. I have a feeling I will just have to leave the room and let him scream about me being gone. I try to tell him I will leave the room if he keeps screaming at me but there is no reasoning with him when he is in that state.
So - wish me luck for tomorrow....and strength too.
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