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Thread: Looking for answers...

  1. #1
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    Looking for answers...

    Hello,
    I have been looking over your site this afternoon for some answers.
    My step brother was in an auto accident last November and is paralyzed from the waist down (sorry, I don't know the correct vertebrae). He also had a compound fracture to his right arm (he is right handed) and has lost most function of his hand at this point. After the accident he was very ill, had pneumonia, kidney failure, a dislocated shoulder... and was kept unconcious for about a month. He just got out of ICU last weekend and is very weak from over three months of fever and lack of activity. My stepmom has been talking with people from Shepherd Spinal since the beginning trying to get him in but couldn't get any help since he had so many bacterial infections. Right now they are saying he is too weak to let him in and we don't know what to do to help him become stronger. They moved him out of ICU so now he is not getting any help eating and we are afraid he is not getting sufficient nutrition. The doctors tell his dad that he is not doing enough but as far as we know they have not outlined a program for him. A therapist comes by but doesn't spend much time and he is going to need more help to be able to get in Shepherds.
    Does anyone know of a site where we can get some exercises and possibly some referrals for someone to come in and work with him. Also any other suggestions. He was an only child before my dad married his mom when we were teenagers so my stepmom really has no help other than the little bit my brother and I could give. My dad is not a supportive person so I am sure my stepmom feels very alone. We are totally new to this and with everyone trying to work and take care of him it is just very overwhelming.
    Thanks for any help or advice you might have.
    Have a great day!

    Debbie

  2. #2
    wow hate to hear that what hospital are you at get aggresive with the drs. and talk to one another its rough. my son has still not got over me being injured. we did not talk . get tough will the theraphy people shepards is the best that where i went,too

  3. #3
    Senior Member BeeBee's Avatar
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    His primary caregiver (his mother?) needs to get tough with his rehab doctor. It is his job to get your brother up and moving. It's too bad that the doctor isn't stepping up and that someone has to do this, but it happens. Check with your auto insurance policy and see what is available. He should have been assigned a case manager who should help you thru some of these difficulties.

    Its absolutely overwhelming. Have his mother contact Shepards and see if they have any referals or recommendations. He should now be in a full-time rehab program that will get him better able to deal with his new life.

    His mother will have to be strong and tough, but shouldn't be alone. How old is he?

  4. #4
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    Hi,
    Thanks so much for the replies. My step-brother is in his 30s but divorced and an only chid (except for my brother and myself) so really only has his mom and dad and us. Most of his "friends" haven't been around in the last couple of months, which in some ways I understand. It is very difficult to see him like this. He was a large man, about 6 feet and always big but now has withered away so much. His dad was supposed to talk with his physical therapist a couple of days ago, not sure how that went but will hopefully find out tonight. We are leaving for the hospital in a few minutes.
    When the accident first happened we knew pretty much immediately he wouldn't walk again but sure thought we would be further along by now. I see on here today people who have been through some rehab and home who had accidents after his. I don't know what more damage to his rehab or how much use of his injured arm he will regain after this much time has passed.
    Again, thanks so much. It's nice to be able to 'vent' a little.
    Have a great day!

    Debbie

  5. #5
    Deb, there is no excuse for him not being fed or provided with therapy in an acute care hospital. Complain loud and long. Work your way up the nursing chain of command (charge nurse, head nurse, nursing supervisor, director of nurses) and if necessary to the hospital director or CEO. Contact the patient advocate. If necessary, contact the local newspaper and see if they will do an expose.

    Have family members trade off time with him so that he is rarely alone. Help feed him. Recruit his friends and neighbors for this too. He needs proper nutrition to get stronger.

    He should have a wheelchair and be getting out of bed every day. At first this may be only a few minutes at a time in a reclining wheelchair, but he should work to build up time in the chair to several hours several times daily. He needs a special pressure reducing cushion for this, and help to do weight shifts every 15 minutes while sitting. Don't let them just put him in a "cardiac" or "geri" chair. Work with the PT on all of this.

    Be sure he is getting turned religiously. Family members should insist on at least every two hours, and should inspect every inch of his skin daily along with a nurse. If needed, get him on a pressure reducing low air mattress to reduce the risk (but he still must be turned). If any redness is seen, insist that the nurse in charge see this and take action to prevent it from getting worse. A pressure ulcer will definately hold him back from getting into rehab.

    Don't let them send him to a nursing home. They are death traps and no matter what they say, they do not provide decent therapy and even less nursing care than he is getting now.

    Keep talking with Shephard. Call every single day. Talk to the insurance company to be sure there is coverage for a full rehab program. Shephard should be helping with this. Get his mom on-line here if possible.

    (KLD)

  6. #6
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    Debbiejw, my brother was also paralized in an accident. He was in a coma for 4 months, had a broken R arm also. As well as broken pelvis, and every bone in his face! Be sure to keep up with his orthopedic doctor that set his arm- this is important because he will need as much use as he can get with it to transfer and be more independent. Explain that to the ortho docs and make sure they order physical therapy!

    I finally got my brother into Sheperd after 8 months of badgering them, insurance denied payment til he was actually there and then Sheperd was able to get the insurance to kick in. If I was in Atlanta, I would go over to Sheperd and keep talking to them. They should come to his hospital to do an exam to see when he's ready to go to Sheperd. Try to get specific recommendations from them on things you can be doing, show that to his present doctor and have him/her put them into orders for the nursing staff, so he gets a good care plan. Have someone in the family check his skin everday- this is extremely important! Don't let him get a bedsore because it weakens the skin and affects what Sheperd will be able to do. They have a great pool, but if he has a bedsore he won't be able to use it for example. KLD is right, you must keep at Sheperd Center, insurance company (who will automatically say no to anything first) and the physical therapy dept. where he is now. The more he is out of bed the better his circulation, mood and appetite. Take him on a pass. He should at least get Range of Motion exercises once or twice a day while awaiting Sheperd. Sending good thoughts to you.

  7. #7
    Senior Member kate's Avatar
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    Hi, Debbie--

    I'm so glad you found us, and so sorry you needed to. My husband also left ICU very weak and ill, mostly because the surgery that stabilized his neck also damaged his vocal cords so badly that he couldn't speak or swallow for a couple of months. The feeding tube kept him alive, but it wasn't nearly enough to keep him healthy.

    We arranged for people to be with him 24/7 for those dangerous weeks . . . help from family members, friends, church people made it possible. I know how scary it is to see someone who used to be strong suddenly shrunken and diminished. You're right to be worried about this, too.

    I was advised at one point that Bruce might need to go spend a month or so in a nursing home, just to rest and regain his strength. The PTs made it sound like a common sort of thing . . . but the very suggestion felt like the end of the world. He stayed in ICU for about a month, then had a week or so on a regular medical floor, then spent another 6 weeks on an inpatient rehab floor.

    It sounds like your brother needs all of you to advocate for him. I think it would be good to find someone with a similar injury to come and talk with him (and you) so you know exactly what is possible and in what kind of time frame. I would press hard on the psych staff for that kind of conversation . . . there must be an active peer support system in place, and he should take advantage of it.

    Please keep us posted, and know that we're thinking of you! No question is too bizarre, believe me.

  8. #8
    Senior Member LauraD's Avatar
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    Hello and Welcome!!

    WOW, Does some of that sound familiar (injury wise). My daughter Heather was injured in June 2000 in a car accident. She was 8 years old then. She is a T-12 with limited right hand use also. She broke her right wrist and developed compartment syndrom which led to nerve damage and muscle loss. She was sent home after a month in the hospital to give the arm time to heal. She did out patient therapy for a little over a year. I wish now, looking back, that I would have pushed for them to put her in a good rehab facility.

    We all know just how overwhelming SCI can be form day one on. Just know that you are not alone in this. There is a great support system here. I wish you the best of luck with your step brother.

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