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    19 Posts
    Distance.....
    By Linda   
    So here I am, back home in Ohio, while my son is dealing with his newly injured spinal cord back in New Jersey.   The injury happened in late October and I spent six weeks in Jersey, spending each day with him in the hospital.  Right before I left, he went to Kessler, but had a set back and is back in the hospital again.  In a day or two he will return to Kessler.  I am 60 years old and have a job in Ohio that I can't afford to lose.  I returned to work on Monday.  I will take FMLA time again when I'm needed in Jersey.  Justin has his father, but of course, his car broke down right before I left, so he hasn't been able to see Justin since Sunday night. 

    The last time I saw Justin was Friday night in the ER when he returned to the hospital.  As soon as he saw his father and I, he started crying and said (I have to read his lips as he can't speak yet) he wants to die, that this is no way to live, and he's tired of it.  He asked about a Home Aid but I told him we can't afford around the clock care.  All I could tell him was that I can understand about wanting to die.  His father could hardly speak except to tell him to fight.  He finally got settled in his room and his friend showed up.  He seemed to calm down then and they discussed football, etc., as usual.

    This distance is killing me.   Justin and his father are very close, otherwise I'd bring him to Ohio to be near me.  This is such a rough situation, I wonder if any of us will ever be happy again, or even laugh again?

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    50 Posts
    Ben s7k 3j7  says:
    Well, sometimes it's good to leave and have a break.  You need it and after he gets going alot of visits will make him want a break too.  I always felt I had to be up and awake or it was almost rude of me.  I'm talking down the road a couple months.  And it's normal to feel the distance even if your just across town.  And being a parent sucks when you know you can't fix them.  Thats all normal.  And sometimes you don't need to be there.  Just a 5 minute call once a day might be all he needs.  But, right now this is all new and scary, confusing, etc...  They had me signing papers for the big operation right away it seems but I think it was really just a blur and more like 5 days later.  I had to wait 12 day's before they would do it.  Can't remember why.  Lot's of things to worry about but just tell yourself he's in good hands, he's strong, and there's no sense worrying about something that could happen but hasn't.  I'm bad at that, I like to know all the bad things that can happen before hand and then let's see how to work around it.  I callit preventative.  My girlfriend say's I'm the most upbeat depressing guy shes ever talked with.  And somehow got a date with her.  If you have any mom type questions I can ask my mom and see what she say's.  Shes 2 years older than you but she was the same age as I am now (40) when I fell out of the car and lived about 2.5 hrs. away from hospital and they farm so they couldn't come in all the time.  It's kind of weird how everyones story is different yet the same.
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    Linda  says:
    Ben, where do you live now?  I'm trying to find options for Justin, but all I can come up with is a Nursing Home.   He's so young to live in a Nursing Home!!  Even if we were able to have him at home with his father, we're not getting any younger, so eventually, he'd be in a Nursing Home anyway.

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    Ben s7k 3j7  says:
    I'm not going to be much help there as I'm in canada.  Which leads me to the question, why are so many people against health care down there?  Or is that just a media thing making it look like that?  Since I was younger I came home for two years and they added onto the house.  Which sort of worked out.  I got a insurance settlement after a few years and gave them the money they were out from me and paid lawyers etc...  I got alot paid for for me and even had my lawyer apyying for things up front till I could pay him back!  That is a tough one to find.  But anyway if he didn't have any or enough insurance just start talking with maybe a therapist in the hospital.  Someone has to be able to shoot you in the right direction.  My mom would get mad at them cause alot of people (doctors,nurses etc...)  will brush you off.  And they would finally do what youwant.  But, thats part of the mmm  fun?  I hated it then and still do.  Problems I have now down the road are cause of the things they don't bother to tell me back then.   Wait till you get a doc that doesn't care at all, then let him have it.  It feels good.  And I don't think a nursing home would help him at all.  Those places just keep you going but usually there's no progress for him at all.  Maybe as a temp thing.  He sounds better than alot of us already but it takes forever.  I think i counted every little dot on the ceiling in my room.  The more mobile he can become the better and little things like a tv and stuff to read will help more the he can imagine.  I think the feeling he has is a key.  i'm just a para but I haven't felt nothing at all for 22 yrs. below my ribs and I'm lucky!   I was with a guy that couldn'tdo anything but talk and he fell out of a car too and he didn't break a bone in his body.  And I don't trhink they ever figured out why.  I say give him 6 month's and see.  Then you will know better which way his body wants togo.  And you need togo do something fun. A good funny movie or going on a rollercoaster.  Something like that changes your mood and helps more than I can tell you.  Maybe just to forget about the bad stuff for just afew minutes.   I sure go on and on in the morning don't I?
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    Linda  says:
    This particular Nursing Home we looked at his a Sub-Acute Care Center which is where we could place him short-term.  They do physical therapy daily.
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    Amy  says:
    I am so sorry to hear about your son's injury? How is he now? Did he have proper medical treatment. I hope he is fine now.
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    Linda  says:
    I'm sorry, I've updated elsewhere on the forum, but not here.  After Justin went back to the hospital because of his sodium level, and I went back home, we thought he'd be there over the weekend then back to Kessler.   But no, he developed complications due to the sodium problem and fluctuating temperature.  In the end, he had brain stem damage.  We took him off of life support and he passed away on December 29th. 

    My opinion only......The hospital was giving him sodium daily and watching his water intake.   I don't think Kessler continued that, and that's what caused his problems.  Of course, that's just my opinion, I could be wrong, and I'll never know.

    I feel blessed to have had that time with him in the hospital.  I miss him tremendously and still have to remind myself that he's really gone.

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