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Thread: For Love of my Brother

  1. #1

    For Love of my Brother

    On January 27th my brother was in a car accident. He has a C-2, C-4 level injury. He is currently at Craig Hospital in Co. We have felt so blessed since his accident, in regards to his care in the trauma unit, and now at craig. Sadly though over the last few weeks as we have begun to look at what next, there is so little out there. He is a quad, and vent dependent. I had such hopes of bringing him closer to family so we could be a daily part of his care. His level of injury is so great that home health care would not be enough, and trying to find a facility that would take him close enough also has been more than difficult. In the entire state of South Carolina there is only one, and a waiting list. I know just enough after all these weeks about SCI to make me feel stupid. Woke up this morning and thought I somehow need to change things as anyone in this situation should be able to be close to their loved ones. I found the SCI community forums and thought maybe here I could find more resources.
    God Bless, Mary

  2. #2
    Living so close to Atlanta, have you contacted the Shepherd Center? It's a really great facility and they can answer your most specific questions about vents and their care.

    Sorry to hear of your brother and hope you find somewhere closer. Good luck.
    Last edited by 2jazzyjeff; 03-26-2007 at 07:50 PM.

  3. #3
    I don't have knowledge about your specific area, but know that you aren't alone. I'm a C2/3 quad 22 years post injury. Unfortunately, there are few facilities and nursing care is expensive, but it can be done.

    You have found a great resource, keep us posted on progress and questions.
    C2/3 quad since February 20, 1985.

  4. #4
    I am puzzled about what about his injury makes having him in a home setting impossible. Is there no insurance for attendant care? Or just no home health agency that knows what they are doing in your area?

    Many people with high injuries who are vent dependent live at home (including many on this forum). It is nearly impossible to find institutional settings like a nursing home that would provide the care that someone with high tetraplegia needs....most are not equipped for this, and either won't take the person, or provide significantly substandard care. You don't have to have RNs around the clock. Many people do it at home with attendants who are able to follow directions and learn the vent and other care.

    I too would be thinking about getting him moved to Shephard if you want him closer to home. Craig is great....but so is Shephard Center, and they will be close for long-term follow-up and will know the resources in the South better than Craig.

    (KLD)

  5. #5
    I don't think Steven Edwards would mind me pointing you in his direction. He is from South Carolina and uses a vent at night. He had been vent dependent for a number of years. Maybe he and his family can give you some tips. Also send a private message to Marmalady who lives in SC. Taj2003 husband spent a long time at Craig and came off the vent as well. They live in IN but she shares openly in caregivers.

    Go to the top, solid blue bar and look at "members list" This will help you locate these members. Good luck to you and your family. It may seem dark but it is not impossible.
    Every day I wake up is a good one

  6. #6
    Mary,

    I would like to point out that although you FEEL stupid, you are NOT stupid...you seem very smart in asking good questions and seeking help...if I had a sister, I would want her to be just like you...

    Just for your knowledge, I am not sci, but have a lot of face-to-face and online friends who are sci.

    There is help, and there is hope. I have learned at least that much right here...

    I wish you all the best also, and my prayers are with you all...

    Teena

  7. #7
    Senior Member taj2002's Avatar
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    Mary,

    My husband has a C3-C4 injury. He spent a total of 9 months hospitalized after his injury, 7 months at Craig. After being on the vent for a total of 7 months, he was able to wean off the vent while at Craig. I had been told that he would never come off the vent, but somehow it happened. It’s a long story how it finally happened. Have you been given no hope for weaning? Please exhaust your entire vent weaning options while at Craig.

    I won’t kid you, it is difficult to bring a high level quad home, but it certainly is not impossible. It takes a good plan, some team work and tapping into any and all resources that you can find. There are days I am exhausted and frustrated, but I just can’t imagine my husband getting the proper care in a facility. There may be resources that you are not aware of which could be utilized. You need to look at all his insurance, auto-insurance policy, state resources, etc. Can your case manager at Craig provide you some guidance? Please feel free to Private Topic me if you have any specific questions. I am so sorry that your family has been faced with this injury.

    Trish

  8. #8

    For Love of my Brother

    Quote Originally Posted by 2jazzyjeff
    Living so close to Atlanta, have you contacted the Shepherd Center? It's a really great facility and they can answer your most specific questions about vents and their care.

    Sorry to hear of your brother and hope you find somewhere closer. Good luck.
    Thank you so much for all the replies. I will have to answer them one at a time... I did Call the Shepherd Center as soon as we started looking. They have not been able to give us any other information that the case manager at craig. There is one nursing center in Augusta SC that can care for vent dependent patients. They have eight male beds, and 12 femal beds, all full. He is now on a waiting list.
    Thank you again, Mary

  9. #9

    For Love of My Brother

    Quote Originally Posted by SCI-Nurse
    I am puzzled about what about his injury makes having him in a home setting impossible. Is there no insurance for attendant care? Or just no home health agency that knows what they are doing in your area?

    Many people with high injuries who are vent dependent live at home (including many on this forum). It is nearly impossible to find institutional settings like a nursing home that would provide the care that someone with high tetraplegia needs....most are not equipped for this, and either won't take the person, or provide significantly substandard care. You don't have to have RNs around the clock. Many people do it at home with attendants who are able to follow directions and learn the vent and other care.

    I too would be thinking about getting him moved to Shephard if you want him closer to home. Craig is great....but so is Shephard Center, and they will be close for long-term follow-up and will know the resources in the South better than Craig.

    (KLD)
    This is where I feel so lost in all of this. I had started my search for accessible housing. What I am being told is that insurance is only paying for 32 to 40 hours a week for outside care. I came on this message boards with the hopes of learing information just like this
    The case manager at Craig has been wonderful. But she has said his level of care is so great that it would be very very hard to bring him into my home. Because I am still raising children and have a busy life with the kids. If I understand correctly, I would need to be the primary care giver, with support from other who could come in when I needed to leave. I want to be there for my brother, but I can't make being a mom secondary, if that makes sense.
    Good Shepard will not take my brother because when he is released from Craig he will have completed all the same things they offer. They are saying he will be released the end of May, the first of June. He will have all the equipment and training he needs when he is released.
    Thank you again for your reply. Mary

  10. #10

    For Love of My Brother

    Quote Originally Posted by taj2002
    Mary,

    My husband has a C3-C4 injury. He spent a total of 9 months hospitalized after his injury, 7 months at Craig. After being on the vent for a total of 7 months, he was able to wean off the vent while at Craig. I had been told that he would never come off the vent, but somehow it happened. It’s a long story how it finally happened. Have you been given no hope for weaning? Please exhaust your entire vent weaning options while at Craig.

    I won’t kid you, it is difficult to bring a high level quad home, but it certainly is not impossible. It takes a good plan, some team work and tapping into any and all resources that you can find. There are days I am exhausted and frustrated, but I just can’t imagine my husband getting the proper care in a facility. There may be resources that you are not aware of which could be utilized. You need to look at all his insurance, auto-insurance policy, state resources, etc. Can your case manager at Craig provide you some guidance? Please feel free to Private Topic me if you have any specific questions. I am so sorry that your family has been faced with this injury.

    Trish
    Trish,

    They are telling us that he will not be able to come off the vent. I am not sure I totally understand why, except he also has some brainstem issues. He had two small strokes after the accident, which has effected his ability to swollow, and talk. He is swollowing some now, and they are going to do another test with the dye, to see how much is going into his lungs. For reasons I don't understand they have said he could not have some of the things I have read about to help him breath on his own, or swollow. There was a point where they told us he may one day have to decide between eating or talking. He can not do either at this point. Please forgive me I feel like I know so little.
    He has learned to drive his wheelchair with a puff and sip. He is being trained on a computer system for communication I beleive. I can say his attitude is amazing, and as the weeks pass he has been able to accomplish so much. As things progress their prognosses for the future may be changing. But the release date is still coming very soon. I had thought he would be at craig longer than three months, but that time line has not changed.
    So, are you the primary care giver for your husband? How much outside help do you get? How is it provided?
    Thank you , Mary

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