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Rehab Choice Help

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    Rehab Choice Help

    Keith is not having a good experience at Spaulding and they are talking about moving him. I guess the nurses aides don't speak English and left him sitting, overnight, in poop. I can' find the rehab checklist and want to help the family know what to ask. Help....

    Any other crucial pointers are welcome right now.

    I would consider these options instead if you are unhappy there:

    Shepherd Center (Atlanta, GA)
    Craig Hospital (Denver, CO)
    Rehab Institute of Chicago
    Kessler Institute (East Orange, NJ)

    Although not as prestigeous as these centers, I have also heard good things about Helen Hayes Rehab Hospital in NY or Mt. Sinai in NYC.

    Ideally, look for a center that is CARF accredited as a spinal cord system of care (Spaulding is not):

    Here is the checklist of questions to ask from the CDRPF:

    Here is another one:

    You will likely have a fight on your hands with his insurance to get him moved, but keep plugging. You can do it.

    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.


      Dear Healing
      I answered you on your earlier post. Please read it== I was at spaulding several years ago - I can see it hasn't changed. If family members can't be with him every day get him out of there asap. What about Shepard?? Be very forceful and voice your opinions with Spaulding- and with your health care provider-- document everything--
      Good luck and best wishes for his recovery.


        Also- this is a very difficult time for your ex husband- and family- someone needs to understand that he can't make any decisions now- a family member needs to step up to the plate and be his advocate- get him moved out of there- it will be the best thing for his recovery- though difficult for his family. These are the dark days but there is light soon= once the recovery starts kicking in-


          Remember - wherever he goes, someone needs to be his advocate. Even at the best of places, there are problems and family has to step up to demand the care he will need. Of course, it is hard for the family to know at this early juncture what that is .... but at the very least, he needs to be well cared for and trained in bowel/bladder/skin care, he needs his pain adequately treated, he needs the most intensive and demanding therapy he can tolerate (with everything from range of motion exercises/stretching/strength training/pool therapy/electrical stim/bodyweight support treadmill training) and he needs safe and appropriate nighttime care when family are not around (turning, bathing, pain treatment, safety checks).

          If you can move him to a facility that is more expert in SCI rehab, that is wonderful. However, even in those places, you will see things you are not happy with so you must be vigilant and educated.

          Unfortunately, the nurses assistant/PCT problem I fear may be near universal... these health care workers are very poorly paid, and there is often a lot of turnover in these positions. However, they are critical to the well-being of every patient... and particularly to the patient's comfort at night and with bowel care, showers etc.. We had problems when my father was in rehab, and heard many bad stories about other patient experiences and we were at one of the "top" SCI places. When needed, we complained to the director of nursing, and some improvement followed. But we became very involved in his care - and often helped him ourselves (stayed at night, helped with personal care/dressing changes etc..) to improve his quality of life as much as possible.

          Bad nights from bad care = poor sleep and more pain = less progress in rehab and more depression.

          Good luck.


            Have you persuaded the family to appoint him an advocate yet? The best and brightest of them needs to be in there kicking and screaming. It seems counter-intuitive but I had to do it for myself. He is on a vent...he can't.

            Sounds like he had a horrible night. Those are DANGEROUS for fledgling SCI.

            Your ex needs to not be left alone overnight again until he is safe.

            Call all the rehabs SCI Nurse recommends. I'd do it today. Start looking for a bed. Meanwhile call the administrator at Spalding or have your ex's advocate do so NOW. They are going to require scaring.

            If that administrator goes home unafraid, one of you failed at their job.

            They need to know that you guys have photos, documentation and lawyers. Any incidents of poop overnight are going straight in the file.

            But truly, I hope they do not leave him alone there again.

            Can you have his family call me, SCI Nurse, or someone, this afternoon? These are the days that can make or break your son's father!
            Does This Wheelchair Make My Ass Look Fat?