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Thread: Hope lost?

  1. #11
    Hello everyone,
    Thanks for all of the well wish's. My brother is 43 years old. We live in NJ and he is presently at Robert Wood Johnson Hosp. I have been told that it is one of the very best trauma hospitals in the area. We are in contact with a social worker who has been invaluable. She has been extremely helpful in guiding us in the many areas that need to be addressed. Nurses have been very good at turning him at regular intervals, not sure of the timing though. My family has been sharing the load of paperwork and associated running around that needs to be done. So much to do right now! I imagine when the cavalcade of paperwork dies down we will decide on one person to help/manage on a daily basis. Your encouragement has led me to keep the hope. We have been assured he will be going to the Kessler institute for rehab. Have read and heard many good things there also. Is there any possibility that the spinal cord can be bruised? How can the doctors tell the extent of the damage?

  2. #12
    I am relieved to hear that you have a good social worker helping and have good family support.
    When I was reading this to Dave he told me about how the medication he was taking for his pain in ICU made him have bizarre dreams. He would try to tell us things that made no sense at the time, complicated by the fact that we are lousy lips readers. Once we thought he wanted us to take him off of the vent. We were devastated that he was giving up. What he was trying to tell us (we found out weeks later) was that he felt like there was a big jar of sand on his chest.
    He wanted me to tell you that.
    Timaru is right.
    Our best.

  3. #13
    Kessler is fantastic. Rehab and teaching that he and your family will receive there will be critical for his future and recovery, so it is wonderful that it is nearby. INSIST he goes there. That's where the real progress will be made. His spinal cord definitely can be bruised/"in shock" right now, and it will take many weeks/months/even years to see how much will return. So hope hope hope. And encourage him like crazy.

    Find out now if the bed he is on is the type the nurse KLD has recommended, and be sure he is turned every two hours (right side, flat on back, then left side, then flat on back etc...), and also examine his skin regularly yourself/with family. Her advice is critical. Of course, this has to be done very carefully in light of his recent surgery. Especially check his butt/sacral area (top of butt crack). If there is any sign of redness that wont resolve or skin breakdown, insist that a wound care nurse come and give recommendations on how to treat it and prevent it from progressing.

    If you develop a sore, it can lead to numerous complications, and can slow down your ability to get rehab. And you don't want that. We cannot emphasize how important this is.

    When my father was in the ICU, we couldn't get the nurses to turn him frequently enough, so we stayed with him through the night to turn him and he STILL developed a pressure sore. But it was very mild and healed with our constant attention.

    Hope hope hope. And push like crazy, ask a bunch of questions.

    Good luck.

  4. #14
    If their is any place in the world to find and hang onto hope, it is in a group like this. Hope is a key stone for me and when I feel my darkest I stop here if nothing else just to find out I am not alone. You are not alone either we need you as much as you need us right now.

    Keep coming to this site the process is slow. My thoughts and prayers are with you and your brother.
    T6 complete

  5. #15
    Senior Member fishin'guy's Avatar
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    Please be sure to keep us posted on his progression, we're all interested. Be sure he gets turned all hours of the day, good luck, and glad you found us.

  6. #16
    Harberrat, yes, there is hope for your brother.. always hope. Yes, RWJ is very good, and so is Kessler. My friend did very well under the care at RWJ and Kessler. The issues he had revolved around some complications and a local community hospital mistakes, system. It is great you are here, getting educated about SCI and keeping up hope. It is a long road. I am so sorry about losing your mom and dad too. There are a lot of great adaptive equipment he may benefit from. If he is going home, and qualifies for Medicaid, check out the Medicaid waiver program to allow for more homecare options, and possible assistance with making home accessible. I will send you a PM. One day at a time!

  7. #17
    To determine the extent of spinal cord damage, a special examination called an ASIA exam must be done. It should have been done immediately after the injury, and several times since, and should be done again when he goes to Kessler. He could continue his vent weaning at Kessler...I would ask to have him moved sooner rather than later if possible.

    Once you get his ASIA exam results, you can post them here and we can help you understand them. You can look at this informative article by Dr. Young about this meanwhile:

    http://sci.rutgers.edu/index.php?pag...nalLevels.html

    (KLD)

  8. #18

    Hope???

    Never ever ever give up hope.......anything is possible!!!
    Peace be with you.....!!

  9. #19
    Every injury is different. It sounds like your brother is in a good hospital. From what I have seen and heard, Kessler is excellent. I spent four months on a ventilator. My doctor told me that I would spend the rest of my life on a ventilator. Very depressing. He wanted to implant a phrenic nerve pacer, I said no. Sometimes you have to fight like a bastard.

    Good luck.
    The test of success is not what you do when you are on top. Success is how high you bounce when you hit the bottom
    --General George Patton

    Complex problems need to be solved collectively.
    ––Paul Nussbaum
    usc87.blogspot.com

  10. #20
    Senior Member rdf's Avatar
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    Quote Originally Posted by harberrat View Post
    Is there any possibility that the spinal cord can be bruised? How can the doctors tell the extent of the damage?
    Yes, it can be bruised. The problem is, even if his spinal cord isn't cut or torn or have bone chips in it from vertebra, etc, bruising alone can cause spinal cord damage. I was in rehab with a kid who bruised his cord. He didn't have any surgeries, he needed no H-rods or decompression or stabilization. Post-injury, his spine and his spinal cord looked as it did pre-injury.

    If I'm incorrect, someone please correct me about bruising and damage.

    I wish you and your family the best. Sounds like he's headed for a first rate rehab, and you never know what lies in store for us in the future - always keep hope alive, for hope is a good thing for us all.

    Take care of yourself, also, because often a tragedy like this is harder on the family members than on the person with the sci. And please keep asking any questions you might have.


    PN, I'm glad you won that fight.
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

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