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Thread: Post Sci Question

  1. #1

    Post Sci Question

    Hello, I Am The Father Of The 23 Old Who Was Involved In The
    December 31 Car Accident That Left Him Paralized From The Chest Down. Since Being Released From The Hospital And Admitted To The Rehab Center Things Have Improved Drasticly. As Far As I Can See. We Have Been In Rehab Since 1/17/07. Since Then The Oxygen Tube Has Been Removed, The Trac Has Been Removed And The Feeding Tube Has Been Removed. I Have Been Thanking God For Every One Of Those Blessings. But I Do Have A Question For Anyone Who Can Help. My Son Is A C4,5,6 Complete I Really Don't Understand To The Fullest What Complete And Incomplete Means. He Was First Said To Be A C5 Incomplete Now I Have Read A Report From The Doctor That Says C4,5,6 Complete. He Started Out With Feelins Across His Nipples Area Across His Chest. Since Then He Has Gained Some Feeling Down His Right Arm To His Elbow. There Has Been No Change To His Left Side. I Am Wondering Is There A Chance That With Time That He Will Gain Some Feeling Back At All? We Have Only Been In Rehab Since 1/17/2007 And I Know Its Early In The Injury But I Read Something On The Forum That Said If After The First Two Days Of Post Rehab The Chances Of Regaining Any Feelings Or Sensations Are Becoming Slim To None As Time Passes On.. He Is Recouping A Lot Faster Than The Doctors And Rehab Therapist Have Anticipated But Overall His Motor Movements Have Been Little To None. I Have Not Left His Side Since The Accident And Sometimes Wondering If I Am In Denial About His Movements Returning At All. I Still Have Faith In God That He Can Do Anything I Am Just Wondering Am I Setting My Son Up For Disappointment. I Keep Telling Him He Will Regain And Will Walk Again. I Just Don't Won't Him To Get Depressed About His Situation And Give Up On Trying Hard To Recover. But On The Other Hand I Would Rather Tell Him Something That Is Realistic And Attainable. Am I Wrong For Thinking Or Doing What I Am Doing Something That I Find Is So Very True Is That Family And Friends Standing By Is Crucial For A Fast And Speedy Recovery. Although Everyone Is Different That Is One Thing I Will Stand By A 100%. The Doctors Tell Me To Let Him Start To Be Indepent But It Is Very Hard For Me To Leave My Son When He Tells Me The Scariest Thing About Being Independant Is Not Being Able To Move Anything. So Here I Am. I Really Must Try To Return Back To Life, Which Will Never Be The Same For Me As Long As My Son Is In This Condition. This Has Put A Real Strain On My Family. I Have Not Slept With My Wife For 41 Days. I Tell My Son That His Mother Needs Me As Much As He Does But The Fact Of Leaving Him To Someone Elses Care Is Just Not Working For Me. Since I Have Been By His Side There Had Been Times When The Nurses Has Made Some Mistakes. We All Are Human But When A Person Is In A Paralized State Every Little Mistake Becomes Major To That Individual. And Seeing The Mistakes With My Own Eyes Just Makes It That Much Harder For Me To Leave Him In Someone Elses Total Care. I Need To Get Back To Life As Much As Possible But I Can't Seem To Let Go. What Should I Do?

  2. #2
    First, let me say welcome to Carecure. You will find a lot of help here, some from people in a position very close to yours. Here are some rather disjointed thoughts...
    Basically, "complete" means no sensation or control at the anus, that is, no connection between the top and bottom of the spinal cord. If I interpret it correctly, the term does not take into account what else may or may not be functioning. So it is possible that someone who is "complete" may in fact be in better shape than someone who is "incomplete." It is still early days for your son. That he is getting return is of course a very good sign, and the return may continue. My approach is to hope for the best but not to raise my expectations too high. My wife is T-5; at first it was complete but now it is incomplete. After nearly 2 years she is still very slowly regaining some sensation (but no motor control) in patches here & there; I expect it will continue, albeit at a glacial rate, but I will be extremely surprised (although ecstatic) if we see any motor control returning. It was difficult for me to comprehend that the purpose of rehab was not to "get better," but to learn how best to make use of what is there now. Eventually your son will be able to direct caregivers and thereby regain some independence. He will also learn to be his own advocate. As to mistakes, they happen - my wife spent a day in the ICU due to a medication error in rehab. I suggest that you spend some time reading some of the old threads in these forums, and you will see the stories of people who have been through this nightmare, and you will learn how they have learned to cope with it all. Family support is clearly a wonderful thing; it's the best thing you can do for him. But yes, you still have a life, and so does your wife. That life has changed, but try not to let it be completely consumed with your (rightful) concern for your son.
    Best wishes,
    - Richard

  3. #3
    Senior Member
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    Don't be so hard on yourself! This is a tragedy that we all know too well. I also have a 23 yr. old son (injured 6/04). My husband is still having a hard time getting past seeing his son in a wheelchair. It breaks my heart every day to see our son like this. Life must go on! Take the time you need to mourn what you and your son have lost. Life will never be as it was before. However, you will find your way! As far as what the doctors are telling you; it is way too early to tell what your son may get back. Tell him that. Tell him it is too early to know for sure what he may or may not get back. My prayers are with you and your family.

  4. #4
    Hi Kaution, so sorry to hear about your son. I'm T12/L1, much lower than your son's injury. But when I was in the rehab, I saw many c4-c6 sci people who came in walking as outpatients for rehab. Some uses elbow crutches, some walking by pushing his/her own wheelchair and some even with just one cane. Slow but they are walking. As a junior patient at that time I asked them every possible question I could think of. According to them MRI results could not tell 100% whether someone is incomplete or complete unless it is very obvious. Many of them whose doctors said they were complete and would unlikely to walk again are now walking. One patient told me he had no movement at all for the first 6 months and after 2.5 years he is walking with elbow crutches with no braces. So it is still too early for any prediction. Everything is possible. But instead of waiting for recovery to come, try to use whatever muscle or movement he has to exercise. I know it is easier said than done but you want to keep him busy with something to keep his mind out of pain or depression if he has any. Hope this help.

  5. #5
    Where is your son in rehab? Have you had a patient/family conference with his team? It is so important that you all take advantage of this time in rehab (which is not likely to be more than another month or so with most insurances).

    It is also critical that you get your rest, spend time with your other family members, and also let your son be alone with his rehab team members some. He needs to be able to talk with them without you being there, and he needs to not feel that he has to put on a brave face for you all the time. He also needs to learn that he can be safe without you there 24/7, and to direct his own care without you doing that for him. These are part of the skills he needs to get from his rehab time. It will be too late to learn this once he gets home.

    I am not sure where you heard that return after 2 DAYS is rare. If your son has gotten some return already, it is likely he will get some more, and this can continue for up to two YEARS or longer. The most rapid return is in the first 3 months. It is way too early to tell how much he will get back. That being said, at this point, it is important to plan for discharge and getting on with life with the function he has now. If he gets more return, that is gravy, and you can rejoice and celebrate his luck in getting that return. No amount of hard work on his part will determine how much return he gets, but it will determine what he does with the return he gets. Don't make promises you can't keep (like telling him he will walk again). Many people here will tell you that walking is not all it is cracked up to be, and if they could just get back bowel, bladder and sexual functioning, they would be thrilled. Even a little return is great and if he only thinks about waiting until he can walk, he may loose out on getting the benefits from rehab that he really needs (learning to keep himself healthy so that he can benefit from cure research).

    I know you feel you cannot handle this, but you can, as have so many other families. I urge you to spend some time talking with the social worker or psychologist who is working with your son. It is important that he not feel that he has ruined your life, even if you feel this way. He is still your son, and he can still have a life, although very different from what both of your anticipated a few short months ago.

    You should read these articles by Dr. Young, and share them with other family members too:

    http://sci.rutgers.edu/index.php?pag...3@AcuteSCI.htm

    http://sci.rutgers.edu/index.php?pag...adjustment.htm

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

    Please keep posting, and don't hesitate to ask questions. We are here for you.

    (Just a little side note....it is very difficult to read text that has every word capitalized....and it is more work to type. Can you type and only capitalize the first word of each sentence and proper names, and use paragraphs? It makes it much easier for us to follow along. Thanks!)

    (KLD)

  6. #6
    Great advice from above. I think you may have misunderstood the post about 2 days post injury and no return.. it's usually up to 2 years post for most injuries. I'm a C5/6 complete, 4 1/2 years post and had 0 return, but everyone is so different. I'm all about being brutally honest to him.. his Dr. and your family should have already had a patient/Dr. meeting discussing everything so he knows. Has this happened? Nurse KLD has asked you in a previous thread where is he doing rehab. A lot of injuries are not in the proper spinal rehab facilities. There are threads with many replies from members about their poor care and how they could have gotten a better chance of return had they been in an accreditted SCI facility.

    IMO, your son is the most important thing in your life right now. His injury is still so new and from what you've said, catching those mistakes has me worried, esp. if you get back to life, as you stated.

    What are the Dr's requests for him to try and be independant? From what I gather, he is paralyzed from the shoulders down...? Everyday he needs to work on something to be more independant, but at his level right now, make sure that he can advocate his care.. as Richard already stated above.

    No one knows what the future holds.. keep him and yourself positive and use this site as the valuable resourse that it is. Good luck to you and your family.





    Life isn't like a bowl of cherries or peaches. It's more like a jar of jalapenos--What you do today might burn your ass tomorrow.

    If you ain't laughing, you ain't living, baby. Carlos Mencia

  7. #7
    It is me again Kaution. Is your son still in the hospital? I was in the hospital for 3 months and I think family and friends support are very important. My wife and my mom took turns to accompany me. It is good if you can get his close friends to involve. Try to mix it up.The difficult times will be more easily passed by. I'm pretty sure he will also find new friends in the rehab.

  8. #8
    My break is C-6,7 ... I left the hospital needing a lot of assistance , I couldn't feed myself, I couldn't do my own "personal" care, I couldn't even write my name ... (25 years later) I have been living alone , without assistance (100% independent) for the past 20 years. I am still concidered a Quadriplegic as I have limited use of my hands. I guess what I'm trying to express is that even if your son doesn't recover completely, He can still have a full & happy life .. healing takes time ... spinal injuries go through several stages http://www.invanet.org/spinal_cord_injury/effects.html and you won't know the full extent of your Son's injury for quite a while. I understand your wish to see positive signs of improvement ... but ,myself, being the injured son, I felt that I had "failed" disapointing my parents because I couldn't walk for them ... at that time I really should have only been focused on rehabilitation and learning to understand what had happened to me ...
    SCI Nurse (moderator) has given the best advice about giving your son time alone, He needs to cry too
    ~ wish for the best , but prepare for the worst ~
    There is a crack in everything ... That is how the light gets in (Leonard Cohen)

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