Will is a challenge

After another bad night, I had lunch with Will, had a 2 o'clock meeting at Spring Harbor and a nice visit after.

I now get to "shadow" when I'm there. This means that I can wear a special badge and follow Will and his staff around and go all over the hospital with them observing his treatment plan being implemented.

I've been home for a few hours and have just received yet another call from SH. Will has been in 4 restraints in 3 hours. He is talking about robots being in the room with him, he's afraid of ten, he's worried about tomorrow and he would calm only to escalate a few minutes later.

The nurse reiterated to me that they can't figure him out. He is a challenge, a puzzle and a complicated little boy.

I feel panicky when I get these calls. Even though he is now asleep, I am wound up tighter than a spring and don't think I'll be sleeping any time soon for yet another night in a row.

I want him to feel better, but instead he's staying the same or is more dis regulated than before. I realize it has only been a week, but where is his miracle? I know, I know, it's SH. That's his miracle. I just want another one: him happy, less anxious, less aggressive, and home with me asleep in his own bed. And I want it NOW!!!

Really, is that too much to ask? Oh, and some sleep for me, a new car, and oil to heat my house. That's not asking a lot, right?

One more thing.........I want a hug.

I want a hug

All I want is a hug. And a kiss, and a snuggle, and a cuddle, and to watch Will sleep, and to see his smile.......

Is that really too much?

A long night and a sad day

Last night was a very rough night. Will was in and out of locked seclusion and had at least one floor restraint as well as being blanket wrapped. I got 4 calls throughout. Surprisingly, (not) I got very little sleep again. He finally calmed and stayed calm on the way back to his room, he was asleep soon after his head hit the pillow. I'm not surprised. I've lived with his struggles and melt downs. It takes a lot out of him.

I went for my lunch visit today. Will looked very tired. He was very quiet, and told me he was very sad and overwhelmed. We talked for a while, I went over all the things he could try to think about when he feels this way: we talked about everyone who cares about him and is thinking of him. That he can call me, that I can call him, that I visit everyday (except Sundays as I work all day) that his dad visits almost everyday. That he is receiving cards from family and friends from all over the country who are thinking of him.

He said that helps a little, the question is---can he access those thoughts when he's struggling? I hope so, but that has always escaped his grasp in the past. Hopefully they can help him with these coping skills and others.

He still doesn't express an interest in wanting to be home, but it breaks my heart to see him sad. I wish a hug could make it all better.......

Breaking my heart

I just called Spring Harbor to see how Wills first day and bedtime went. I kind of wish I hadn't.

He had a rough patch at dinner time. I believe he was upset because he had to eat on the ward and not in the cafeteria. This is standard with new patients I guess. He settled down and ate in his room.

Bedtime did not go so well, he is still awake and screaming. He is on locked seclusion for the moment because he kept going after staff and trying to bite and hit staff.

I know he's where he needs to be, but I just want to hold him and lay with him till he falls asleep. I want to hug him and tell him I understand and everything will get better, but I can't. Cause he's there and I'm here, without him.