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Hope lost?

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  • Hope lost?

    My younger brother was recently in a car accident and is paralyzed from the neck down. His injury is from C3 to C7 and his spinal cord showed no fluid on either side at the injured area. He had no feeling below the neck when he first arrived at the hospital and eventually was placed on a respirator. It has been almost two weeks since the accident but within the last day he has managed to recover some breathing function but is still on a respirator, and still unable to move anything other than his head, neck and shoulders. We have been hoping that once decompression surgery was done that he would have a chance for recovery but were heartbroken to hear that this was highly unlikely and also that he could be facing life and death situations such as blood clots, infections etc... The surgery we are told is only preventative and not for recovery of his injury. As many times as the doctors keep telling me there is no hope for recovery, I cannot help but hold on to my thoughts that he will recover. In the last year and a half my family has suffered the loss of both my Mom and Dad and now feel as if we are facing the same with my brother. Has anyone had a similar injury and had some recovery or is all hope lost.....

  • #2
    harberrat, I just sent you a PM, and you should not lose hope at any cost, and neither should your brother!!!

    Take care all!



    • #3
      My husband fell from a tree in Oct 08.
      I am trying to think of what I wish someone would or could have told me then to be of some help. I am sorry this has happened to you.
      Hope is not lost. It depends on what you mean by recovery. We have accepted many things in increments. His break was C4, but some spinal injury in C2,3 area. He is paralyzed from shoulders down and has been that way since right after his fall. He uses a ventilator at night.
      It can all be pretty overwhelming at first.
      I am new to this community. So far I am quite impressed by the info and wish I had known of it before.
      How old is your brother?


      • #4
        Harberrat, welcome to CareCure. You will find this an extremely helpful site, filled with people who have been - and still are - there, as well as with caregivers, nurses, and the incomparable Dr. Wise Young. You can tap into the integrated person-centuries of experience and into the most up-to-date knowledge of SCI anywhere.

        To your question - the one thing that seems to be certain about SCI is that nothing is certain.
        Hope for the best, but plan for what appears to be the case at the time. Whatever happens, you'll manage to live with it.

        In the meantime, there's a lot to learn and manage. Your brother needs an advocate to speak up for him and to keep track of the various doctors and specialties, insurance issues, medical equipment issues, care issues, and on and on. Will you be playing that role? It's a tough one, but it will make a huge difference to your brother. In time he will be able to take over these things, but that will take a while.

        Best wishes
        - Richard


        • #5
          I'm so sorry to hear about your brother. I can't imagine what it would be like to be that hurt. I didn't need a respirator or anything like that but I have recovered a level of function. Not much more than that unfortunately and not completely but typically after the spinal cord comes out of spinal shock, he may recover a little bit of function and you never know what's going to happen in the future. It's all very uncertain at this point if that okay yeah okay
          C-5/6, 7-9-2000
          Scottsdale, AZ

          Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.


          • #6
            very sorry for what you and your family are going through. there is much to learn here. lots of support, and many here who know what you are going through, as well as expert Dr and nurse. many here pray as well. hope is not lost.


            • #7
              don't give up hope, my bro went through the same thing your going through. Its hard but remember its still him. He's probably all you have right now so keep strong.
              C7/C8, T1 incomplete;

              For stalkers convenience:
              My drawings:


              • #8
                Welcome to our forums. As others have said, never give up hope. That leads to despair and "hopelessness". There is so much of life still available to your brother, even in the worst case of no further return. The fact that he is getting some diaphragm movement, and can move his shoulders are all good signs of potential to get off the ventilator, which would mean either an incomplete injury or one lower than C3. Time will tell.

                More importantly at this time is getting your brother to an appropriate specialty SCI Center ASAP. Where is he now? Is he a military veteran?

                It is also critical that measures are taken to prevent pressure ulcers. A family member needs to inspect his entire skin surface daily with a nurse. Any pinkness or redness that does not fade in 20 minutes is reason for alarm. Open areas are already pressure ulcers. Insist on regular turning. Since I assume he is on VAP precautions with head of bed elevation constantly, he is at MAJOR risk for sacral pressure ulcers. He should be on a high tech pressure reducing low air loss mattress, but he still needs to be turned at least every 2 hours. A pressure ulcer now would be disasterous for his rehabilitation and future qualify of life.

                Please come back and post your questions. We can help.

                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


                • #9
                  SCI nurse said everything I would have said if I knew how to.
                  All of those things are crucial. Dave was fortunate to be in a local hospital that did these things, so his skin was in good shape when he went to a rehab hospital 5 weeks after his accident. Some people were not and it delayed their rehab. He was able to wean off of the vent at the rehab hospital. Even though the local hospital did a good job, they rarely see SCI injuries like this.
                  Dave was at Craig Hospital in CO for 3 months. Is there a social worker or anyone who can check into getting him to a specialty hospital?This is all overwhelming. I woke up this morning thinking about you. Please write again.
                  As SCI nurse said,INSIST on the turning.


                  • #10
                    What should be the motto for the newly injured and their families, "be prepared for the worst but hope for the best", it's far too early to tell how much return he will get.


                    • #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?


                      • #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.


                        • #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.


                          • #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


                            • #15
                              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.