I can't blame him for thinking that.  As, I did and everyone else for that matter.  He has alot of healing to do and I'm talking a few years at least.  I'm still learning new ways of do things or just how to live.  I was 18 and now I'm 40 and I think I'm still healing!  Well, sort of.  I know a few years after I wasn't really settled into life yet so It does take time and now if he's 31 some will take longer but other things like life outside might come along quicker.  I get angry and want to fight with who or whatever is in my way from doing general day to day stuff or just taking a shower.  I would also like to see how hes doing in two years since feeling all over I would think is just showing him that he may just get a second chance at moving again!

Linda- many states have programs through their Dept. of Assistive and Rehabi=
litative services, as well as the Dept. of Aging and Disability services to p=
rovide care to disabled adults in the home while their primary caregivers ha=
ve to work. It's worth checking into. There are also programs to help modify=
homes to make bathrooms and doorways more accessible for a wheel chair to f=
it. Medicaid and other programs will pay for ramps as well. A very good reso=
urce in your community is to contact a caseworker or supervisor with your lo=
cal Adult Protective Services office. They usually have a wealth of informat=
ion and working relationships with these other agencies, and can guide you t=
hrough the process of securing other services for your son so that he can go=
home, and at some point live independently, if he is receiving the assistan=
ce he will need.

I am so sorry your family has experienced such a devastating, life changing s=
et of events. Your son and your family are in my thoughts and prayers.

Thanks Ben, maybe I should be more optimistic.  One doctor told us that if he didn't get movement within 72 hours of his surgery, he never would.  Others have told us it could take a couple of months to see changes - one said two years.  Hard to know who to believe.  But yes, he does have feeling.  At first, he was swollen all over, and couldn't feel anything.  Now that the swelling has subsided, the feeling has come back.

Thanks for all the good information, Jamie!  I've already this morning written to the Adult Protective Services Office.  I live in Ohio and my son and his father live in New Jersey.  I just returned this week from NJ and am back at work.  It's not easy being here and not with my son, but I will wait and go back when he needs me.

Justin wants desparately to go home.  His father works 7:00am-6:00pm or later.  In the evenings he officiates sports - umpire, basketball referree.  He's 63 years old and he's been working like this for decades.  He has also converted the family room downstairs into an apartment that brings in $700 per month.   Without all of these things, he'd lose the house.  This is why it would be difficult having Justin at home.  I can't give up my life and job in Ohio because I have to have an income and med. insurance.

Trust me, I've laid awake many nights trying to figure out a way to have Justin at home, but I just go around and around in circles.

Linda.......I just saw your post and thought it might be encourageing to know that......way back in 1982.......when I had my accident.......I was told that I'd never feel or move my legs again. Well.....I didn't for a year and a half......but after the fifth surgery on my spine.......I began to get some motor function back.....and with therapy.......worked up to walking with braces and two canes. So........function can return .......much later than 72 hours. It's certainly not guarenteed.......just......possible. Much luck with your plans in helping Justin ..........warm regards.......Norma

Hi Norma -

Thank you for your encouraging message.  I feel that the fact that Justin has feeling in his arms and legs must mean something.  Yesterday I spoke with a man who is a quadraplegic for 30 years now.  He lives alone and works.  I would like Justin to be able to meet someone like him, because right now Justin feels totally alone and lost.  Justin feels his life is over and he doesn't have anything to look forward to (his words).   We don't know anyone else who has a spinal cord injury.

Congrats on the strides you've made!

Linda

Thanks Linda.........it occurred to me that if you can get Justin to this site.......it has wonderful resources......not to mention many, many people who have had SCI......in which to share.....and learn. Dr. Dan Gottlieb is one of those resources who........shares much of his wisdom.....and.....himself....on a few different discussion boards. I think Justin could benifit from so much that the Reeve Foundation offers. I wish you much luck in helping Justin adjust . 

In addition to the services Jamie suggested, try getting in touch with Community Resources for Independence in New Jersey (CRI, Inc. 814-838-7222 and ask for Roseanna Wayne.)  They operate in each state under similar names.  Their goal is to help give aid so that people can live in their homes and not have to go to a nursing facility just because they need caregiving.  They also have a wheelchair basketball group, which means lots of athletes who would be encouraging for him to meet and talk with concerning his future as a quad.  This is just the beginning of his and your family's live with SCI.  There are going to be huge emotional, financial, logistical, medical and relationship changes for years to come.  Try to get all of you into some type of family counseling as soon as possible.  It may help you all if you set up a CaringBridge website so that your extended family members and friends could keep in touch and communicate with your son as he recovers.  And your idea of a computer is right, get him set up with a small laptop or IPad as soo as possible.  Allowing him to communicate with the outside world will do a lot to help him begin to make positive forward movement in his new life with SCi.

Thanks for the info!  I've been reading, trying to absorb all of the information I can about SCI.  I live in Ohio.  If Justin ends up going home, he will live with his father in New Jersey.  I worry alot, about what will happen when we die and he's left alone, and many other things.  I will definitely call CRI, Inc.   There really isn't any extended family, just my ex-husband and myself.  I'm 60 and he's 63.   We both still work full-time.

Currently Justin is back in the hospital and on Monday he went into kind of a semi-coma state.  His sodium was too low, but now all of his vital signs are good, but he's still not responsive.  The doctors are stumped.  Today they are bringing in a Neurologist.  I am wondering if he sustained an injury that no one was aware of until now.

I'm very blessed that I was able to spend six weeks with Justin in the hospital directly after his accident. 

I have put this in God's hands.

You say this injury causes huge emotional, financial, logistical, medical and relationship changes for years to come.  Well, what if there aren't any finances?  We didn't plan for this, of course, and the only thing my ex-husband and I own is a house in NJ which he lives in along with his 87 year old mother who he cares for.   Other than that, there's no money, we are not wealthy people.   How do poor people handle this, there must be a way.

As for the laptop or ipad you suggest, I can't just go out and buy one.  My trip to NJ when the accident happened cost me over $1K which I'm now trying to pay off. 

There is no money.

I understand there's no money.  Take a slow breath.  So much is being thrown at you at once and your mind is racing at all the future is throwing at you, but you haven't had time to process what has just happened and today's situation.  Justin's still very sick and is having post injury complications that need to be stabilized.

Most people don't have much money.  But Justin's injury comes at a time when there are some wonderful opportunities for help.  You are going to call the CRI people when you get a chance.  Also call the people at the Christopher Reeve Paralysis Research Center.  That number is 800-539-7309.  They can talk to you about priorities and the things you need to start doing now, ones that can wait and where you can look for help.  They will also be able to send both you and Justin's dad a free Paralysis Resource Guide that is just full of information about what is ahead.  Justin must have some type of insurance right now covering some of the medical and rehab costs, so for now, put that financial worry aside.  You don't have to pay those bills this week.  Since he was in an accident you all know if there will be a settlement of some sort that may pay further costs.  If there is and he wasn't at fault, ask the person you talk to at the number above to recommend a lawyer who specializes in paralysis cases, this is not a time to get an ambulance chaser.

See if there is a support group in your area for caregivers of SCI.  That would help you so much, they have experience to guide you to resources, help you know what you do and don't have to worry over, and the ability to understand your fears and hopes.  Suggest the same for Justin's dad in NJ.

The IPad.  It's Christmas, are there relatives, friends, co-workers who wanted to give him gifts?  Suggest they pool funds to supply some of the more "fun" needs like the communication devices - IPad (doesn't have to be the latest version); voice activated remote for television; soft cotton clothing that's easy on and off.  I'd also consider going to a local NJ Apple Store and telling them Justin's story and asking if they'd make a donation or deep discount of an Apple IPad.  You may be surprised at their response, especially during this season because it could be a wonderful news story.  If you're not comfortable doing that, let me know.  I don't mind contacting the local one and asking for you as an Apple user.

Right now CRPF is having a contest to give away a free power chair.  The entry deadline is Jan 18, 2013.  If Justin's insurance isn't going to cover that cost, look at the contest information and enter.  You never know.
 
The people at CRI, Social Services and social workers at the rehab place will be able to help you make decisions about where Justin should go after rehab.  But they may help you figure out how to help keep him in an independent living situation instead of a care facility.  It looks impossible now, but you and his dad have a lot of talking to do with people about options.  I think it's important to say that his recovery will be better if he believes that efforts are being made to get him home instead of a care facility.  His feelings of wishing he were dead are understandable and may linger for a long time.  Rehab will take a while so don't talk directly with him right now about a facility or home until you and his dad have had time to really explore all the options thoroughly.  

This is the link to the page on the CRPF site for Newly Paralyzed.  It's a good place to start for info to read.  The Paralysis Guide is available for download while you wait for the guide in the mail.  Keep asking questions here.  Take one day at a time.  Really.  SCI are fluid and the situation changes daily.  We are praying for you, Justin and his dad.
zuzu

http://www.christopherreeve.org/site/c.mtKZKgMWKwG/b.4514599/k.901E/Newly_Paralyzed.htm

Hi Linda, I'm sorry to hear about Justin's accident. These things are never what we think will happen. I have spinal cord cancer, I live in assisted living, I just turned 40. I feel Justin and I have a lot in common. I've been in my wheelchair 1 1/2 years and still There r days where I can barely think of anything else than my situation . I applaud u for being the for him and trying to find resources so he might continue on with his life with dignity, respect, and meaning. Yes this website has been good for me. You and your son will be in my prayers. My email lkempf4@yahoo.com

Hi linda my name is mark and I'm a L1,L2 incomplete. although I wasn't as an an incomplete.In aug. of 2011 I fell from a tree and ended up spending 3 weekes in the hospital and three weeks in the rehab facility. While in rehab thats where I made a disision for myself on weather I was going to let everybody do things for me or I was going to try and make the best of what I had left. After leaving rehab I spent 2 more months in bed due to bed soars. Since then I have tried everything that I can to keep myself busy and active. On march 31st my left leg started to move and two weeks later the right one began as well. To this day they are still improving everyday and I have never given up since day one. I have yet to walk but it will happen very soon and anybody that tell you or your son that it can't be done is just plain full of it. Half of the battle is a mental statues and once you get it into your head that nothing is impossible things will get easier I promise you that. You just have to remember that the hop never dies unless you let it. They come out with new treatments all the time and who know how far the stem cell research will go. If there is anything I can help with please let me know I would love to be of any help I can. Mark

Hi Mark -

It sounds like you definitely will be walking one of these days!   Good for you!  Justin is supposedly a C4, but has feeling in his arms down to his fingertips and feeling in his legs at least as far down as his knees.  Who knows what that means.

Right now we have much bigger concerns.  While in the hospital, Justin's sodium level dropped more than once.  Each time they limited his water intake and gave him sodium pills.  When he left to go to the Kessler Institute, his sodium level was good and he was doing great.  I guess when he got to Kessler, they didn't continue giving him sodium pills, so his sodium level took a rapid drop.   To make a long story short, that was two weeks ago, and how he's in the ICU and has been unresponsive for a week now.  I'm back home in Ohio now but speak to his father daily.  From what he tells me, Justin blinks to respond to questions and looks around.  He occasionally sticks out his tongue.  They have been doing an EEG for a few days now.  He's 'in there' but getting him back out is the unknown.

It's been a rough time for me, but I do get to talk to him by phone, and his father tells me he blinks when I talk to him.

I can't even think of anything beyond this point right now, all I can do is pray. 

Linda I am sorry to here about the recent events that have been taking place. I can't imagine what must be going thru you mind at this point. But you have to believe that he will pull thru this and maybe this will be your christmas present. He' is going to be just fine and he will be back to his old self in no time you'll see. I had a similar experience not as bad when I was in rehab with blood clots. My left leg blew up 6 inches larger than the right in a matter of four hours. Things just take time to get back to normal. His body is not the same as it used to be and things take longer to heal. As far as getting your house asssible get with your local independent living center. They can help with wheel chair ramps and home modifications that you may need. They can also help with nursing care and direct you to some financial resoares. I would love to stay in contact with you to hear how your son does . If you would like to contact me my e-mail is mdlugozima01@yahoo.com I will try to help as best I can and if I can't I may know someone who does know the answer to your questions.

There are no guarantees that he will be fine, the doctors have said this may be irreversable.  And as far as being back to his old self - that will never happen due to his SCI.   He will never be whole again.

I don't worry about the house or wheelchair ramps anymore.   All I worry about now is his present state and what will happen from here. 

Prayers continue for Justin, his dad and you.

Thank you so much!!!

Linda the doctors also tpold me I had a zero percent chance of ever walking again. If I were in this situation I would try to stay positive and pray. Doctors are not always right and with some prayers and some hope things will turn out for the best. There are many of us on here praying for justin and his recovery and we all hope everything turns out for the best.

Thank you!

Justin ended up with brain damage, I guess caused by his sodium level fluctuations.  On the 25th we removed him from life support and he passed away this morning.  My heart is broken, but his injuries were massive and I was told I would never have had my old Justin back. At least now I know he's at peace.

Thank you all for your prayers.

Linda Richards

Linda, we are so sorry for the loss of your dear son, Justin. You will be surrounded with comforting arms for days to come by all of us who have read of your love for him. May you have peace one day in the fond memories of his shining face.

I am so sorry for your loss. May you always remember his smile and the love you had for him and knowing how much he loved you.. My thoughts and prayers are with you and your family, with deepest sympathy. God Bless.

Linda,   We are so sad to hear about the loss of your son Justin. I wish all our prayers could fix your broken heart. As a mother myself I just cannot imagine your pain and suffering right now. I wish there was something we could do to help you. I hope you will find peace and comfort knowing he is no longer in pain. You and your family will be in all our thoughts and prayers. I hope that the memories you made through the years will help you get through this difficult time. Linda, please take good care of yourself and take time to heal from this sad loss. Donna