Not as easy as I had hoped...

Well it's been 5 days since Nate transferred to Wayside in Framingham. Unfortunately the transition wasn't as smooth a I had hoped it would be. I haven't been out to see him yet myself but have talked to him on the phone which seems to always end up with him wanting to fight and hang up on me. He claims that he is having more episodes we agreed together that is is more than likely from the stress of being in a new place. The problem is that he feels that when he wakes up from his episode that the staff are all looking at him likes it's his fault and that he is bringing on the spells himself. A little bit of paranoia I think. When ever I hang  up the phone with him I can't help but think I made the wrong decision. Today I called him and he was very agitated. Nate didn't have a great visit with Dad and Jack last night so he felt the need to take it out on me today. Honestly I don't know how much longer this is going to go on and I don't know how much more I can take. When Nate decided to hang up the phone he passed it back to whom ever his person for the day is. I was obviously upset and apologized to that person telling him I thought I made a mistake. He said I made no mistake I was only asking him what had happened the night before. As I got to the point of being hysterical I just said thanks gotta go. About five minutes later Nate called back much calmer and apologized and started telling me what had gone on the night before. I was numb from the first conversation and really couldn't even speak to him. I told him I was sorry he had a bad night and I had to go. He asked me to stop crying I said ok and he said promise I said ok gotta go. I haven't stopped since then. Today is one of  those days you wish you had slept all day.

Moving Day..

Well seems we have finally made it to the point of moving on. Honestly I never thought the day would come. We have had so many moving on dates only to be cancelled for another time. Nathanael or Nate is how he likes to be known as now. Funny Nate decided to change his name because he felt the old name was filled with bad memories from his past that made his present so very dark and any future impossible to even think of. Nate from here on in is full of life and hope. We are moving to a step down unit in Framingham. This unit is heavy therapy and getting Nate ready to get back into the real world. this will last a couple of weeks then on to a day program with Nate coming home at night, almost like a school day. Nate is chomping at the bit to get back to school. He even tried to get me to tell the doctors he did not need this new program. He felt great and he wanted to just come home and go back to school. Not a chance buddy, I am nit ready to do this all over again. Small steps that's all we need to take. So as of tomorrow Wednesday, January 12,2012 an old journey ends and a new journey begins. My fingers are crossed to have a smooth transition. Will let you all know how things turn out.

Looking Up

Okay so here we are....Nathanael has made some progress in the fact that on Christmas Day we had a family visit and we got through it without any episodes. I'm keeping relatively calm about this because before when we seemed to take amazing steps forward., we always ended up double the steps backward. I haven't written in a couple of weeks because nothing seemed to change. We would take Nathanael out for "on the ground" passes that always ended with an episode. The past one being last week, we got almost through the pass and as we got to the elevator Nathanael had an episode. Poor kid. This one seeming to be the longest of them all. The one good thing about this past episode was he was out longer than usual but didn't wake up in turmoil. Whew.. Much better. Now we are talking about what happens if Nathanael can't make the transition to home. I have to say the options in my eyes are not good. We are talking long term residential placements. This I'm not looking forward too. Our visit yesterday is giving me a little more hope that maybe this is just another bump in the road that as a family we will get over and someday look back and say remember when.... My fingers are crossed.

Okay so here we are one week later. Nathanael was never transferred because he was still too unstable. Although this past Friday and today he seemed much calmer. I'm sure it's the result of medication increases and changes. He also seemed resigned to the fact he will eventually have to move on. It kind of scares me to think how calm he is at this point, makes me wonder when the other boot is going to drop. I can only hope that Nathanael finally can see that not every one is out to hurt him and that we can all help him to be safe in this world. I feel like I should be ecstatic that his agitation over leaving Children's seems to have become a thing of the past, but something inside me says this could be the calm before the storm. I wish I could get past this feeling .....

Weekend of Horror...

This weekend we got an hour pass so Nathanael could go off the floor and just hangout with family and friends at this massive city they call Children's Hospital. I brought Nathanael's friend Danny hoping to kick start a little more memory for Nathanael. he visit started off great. We went down to the lobby went to CVS looking for dry erase markers for the dry erase board Nathanael has in his room. He had I think a black and a blue one but wanted other colors. Unfortunately CVS didn't have any so he bought a note book to use as a journal because he had filled his other one. Nathanael was told earlier in the day by his Doctor that Children's had done everything the could for him and on Monday he would transfer to McLean Hospital and get ready to transition home. He was clearly becoming more agitated as the conversation went on.I tried to calm him down, support his feelings but also let him know it was okay to be scared but no one  was going to let anything happen to him. Well Nathanael did  what Nathanael does he just passed out mid conversation. This is how Nathanael shuts the world. When he is so stressed is body and his mind fight each other and to stop that fight he just passes out. When he came to he was still very agitated. You have to understand that when Nathanael comes too during these episodes he doesn't always remember what has just happened or in away he does and since being at Children's he tries to flee the nightmare. The first time it happened he tried to break out through the doors. This time he was with me and Danny so when he woke up he ran. Thank God he couldn't leave the building only because of the direction he ran. Picture this....Security is roaming through out the hospital for forty five minutes to an hour looking for him. The head of security said it's time to notify Boston Police. We go back to the floor to call as he picks up the phone he hears the code Nathanael has been found. Great I'm thrilled he says stay here I'll bring him back. The next thing I hear is "Code Blue" being called for where Nathanael was located. You hear all these feet running out side the door and above your head. I'm left there thinking my kid is dead. He finally takes me to the ED. Where Nathanael is unresponsive and having the worst hyperventilation episode of his life. I was able to tell the team what was happening and they were able to treat him correctly. Once he was stable and feeling better he was transferred back to the floor. Sunday came Nathanael called and asked if I was coming in would I bring Sharpies. No problem I get there and can see he is clearly not in a good frame of mind. I got his attention he came right to me smiled because of the markers and almost in a state of panic said he needed to talk to me. We finally found a room where we could be alone and he went right back into the conversation we were having on Friday. I told him everything was gonna be okay tried to talk him down but again he passed out. I went to get a nurse and by the time we came back he was coming around. the next thing I know he goes to the door and tries to break through it. I was asked to leave the floor by the back door and wait down stairs for twenty minutes. I decided to go home because clearly I couldn't keep him calm. Never in my life did I think of myself as being a stressor in my sons life.

Waiting for phone calls every day

Nathanael's "passing out" episodes started happening almost one a week. He passed out playing soccer at school, He passed out in his room, in the living room. He was incoherent one day coming home from school on a MBTA bus one stop before our street the bus driver notice him and called 911. The paramedics were able to get his info from him. They realized he lived on the next street so came to the house before taking him to the hospital.
Nathanael had this huge scratch on his face that went from the bridge of his nose and across his face. Found out he had cut his face with scissors claimed he was going through an initiation for a gang. He was coming home with all these wild stories, the gang story, helped someone who was stabbed in the subway, fell off the platform onto the train tracks. All of a sudden we were questioning if he was lost between fact and fiction. His high school has bent over backwards to help us out. They made arrangements so Nathanael could take the regular school bus from Needham  because it just wasn't safe for Nathanael to be using public transportation any more. The last pass out was on the school bus. Nathanael was taken to Beth Israel Deaconess in Needham. This by far has been the biggest nightmare of all because when he woke up he thought he was four years old. He erased his memory of the last eleven years. Slowly things have been coming back to him. After this last episode Nathanael ended up at Children's Hospital Bader 5 it's called. Best Psych ward in the world for kids.Unfortunately insurance companies don't understand the human side of things and has decided that Nathanael has had enough treatment. Now we are sending him to Maclean Hospital which I'm told is awesome also.  This will be the transition time for him  in between being in the hospital for two and a half weeks and coming home. He is not happy about this transition at all. Told me today he wants to give up, I should give up on him. He is going to stop trying to get better and the worst thing of all he said he would rather die than leave Children's. No matter what I said to him he couldn't get past wanting to die today. Don't know now where this next stop on Nathanael's Journey will take us.