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  • Rehab Delay

    Has anyone attended this rehab center? I've been told that this is where Chris Reeves went for his rehab and they are associated with Washington University School of Medicine, where they do a lot of SCI research, and with Chris Reeves hospital in Chicago--they apparently work in tandem trying to find a cure, etc. for SCI.
    But, I want to know the quality of care received there and if it meets the needs of its patients? Or, if anyone had a bad experience there...what was it and why did it adversely affect them?
    Thank you,
    Debby, Troy's mom
    Debby, Troy's mom

  • #2
    debby i went there and still do on ocasion the people are great no complaints from me the therapist are awsome very friendly helpful people my experience was good ther i give a a plus but thats just my opinion
    to alcohol the cause of-and solution to-all of lifes problems [homer simpson]

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    • #3
      Christopher Reeve went to Kessler Institute for Rehab in NJ for his rehab, not to St. Louis. He did do some work in St. Louis as an outpatient when John W. McDonald, M.D., Ph.D was there, but that was a long time ago, and the doctor has since relocated to Baltimore.

      Not sure what you mean by Christopher Reeve hospital in Chicago. Perhaps you mean Michael Reese Hospital in Chicago (which does not do SCI care)? Perhaps RIC (Rehab Institute of Chicago) which does SCI care but has no association with Christopher Reeve.

      (KLD)
      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.

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      • #4
        Not sure what I mean either...just something that was said to me and I should have researched it before repeating it.
        Thanks,
        Debby
        Debby, Troy's mom

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        • #5
          Actually, I think they may have meant that Wash U has an affiliation with the Christopher Reeves Foundation. Don't know where Chicago came from.
          Debby, Troy's mom

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          • #6
            Christopher and Dana Reeve (not Reeves) Paralysis Foundation: www.paralysis.org

            Lots of good information available there.

            (KLD)
            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.

            Comment


            • #7
              Rehab Delay

              Troy's rehab has been delayed by several months, he was injured June 27 of this year and got bedsores from the first hospital he was in.
              By all accounts he should have gone to rehab three months or more ago. But because of the bedsores it has been delayed. Will this mean that he will NOT recover as much as he might have if he had gone to rehab sooner?
              I know that it's going to make rehab harder for him, because the constrictures in both his arms are very pronounced now, whereas, just weeks post injury he could move them quite well and with a minimum of pain. Now, just repositioning him is quite painful for him and we can only bring his arms out half bent...before he could straighten them completely out and even turn them over, top to bottom, although he did not have any control of his wrists or hands, at least he had that. Now, he basically has nothing.
              The in hospital PT focuses on sitting him up now, and trying to move his arms and placing splints on them to straighten them out more. They really don't do much with his legs.
              Thank you for any input, whether it's good or bad...I need to know the reality of the situation so I know what's best to do for him at this point.
              Thank you,
              Debby, Troy's mom
              Debby, Troy's mom

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              • #8
                I hope you are seeing an attorney about the acute care hospital's failure to prevent such (preventable) severe pressure ulcers.

                There are a number of studies that show the best outcomes with rehab when there is little or no delay in moving the patient directly into a SCI specialty rehab program. Not only are medical complications such as pressure ulcer, contractures, HO, kidney and bladder complications, etc. more common with such delays, but depression and poor coping is made much worse by this. Nursing homes are also not staffed by rehab nurses, so it will be difficult or impossible to get an appropriate bowel or bladder program established, and he is unlikely to get the appropriate education or counseling he needs.

                He should not be sitting at all if he has severe pressure ulcers. Try to find a physiatrist who will assess his contractures (not "constrictures"). He may need Botox injections or even surgery if he hopes to have any use of his arms. If his injury is at C5 or C6 the loss of arm flexion and extension will make him a functional C4, which is much worse for self care. He needs to put up with as much pain as he can to get through this process, and they should medicate him for pain prior to his therapy time. Splinting and ROM may not be enough. He also needs good appropriate therapeutic positioning from the nursing staff 24/7. He should also be getting daily ROM his his legs in addition to his arms, but in a nursing home this is unlikely to be done. You need to learn to do it and arrange for family to get this done for him daily.

                (KLD)
                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.

                Comment


                • #9
                  He is not in a nursing home. He is in a wound care center because of the bedsores. The bedsores are healing quite well, the smaller one is almost gone and the larger one is less than half of its original size.
                  I visit him quite often and talk to him on the phone every day encouraging him. And, a psychiatrist comes in to see him regularly.
                  He is supposed to be going to rehab soon...within a few days I'm thinking. I will check into the botox injections and pain management for his therapy when he gets to the rehab center.
                  An attorney already has all the information about the first hospital's inadequate care. We're waiting to hear back from them.
                  Thank you,
                  Debby, Troy's mom
                  Debby, Troy's mom

                  Comment


                  • #10
                    My rehab was delayed due to a vent. It hurt me in many ways. The muscle *atrify made me weaker than I ever thought possible. The constantly lying down made it impossible for me to sit up because my blood pressure would immediately fall through the floor, so by the time I made it to rehab I was to weak to do much plus the b/p made it hard to stay uprright especially while working out. I'm not sure what to suggest other than that wherever your son is work on these issues prior to rehab.

                    -Chris
                    Say what you mean and mean what you say because those who mind dont matter and those who matter dont mind.

                    My Myspace


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                    • #11
                      If he is in someplace like Kindred, it is a nursing home, no matter what they call it. If it is licensed as a long term care facility instead of an acute care hospital, and surveyed and accredited by Joint Commission using long term care standards instead of acute hospital standards, it is a nursing home.

                      (* atrify = atrophy)

                      (KLD)
                      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.

                      Comment


                      • #12
                        Originally posted by SCI-Nurse
                        He should not be sitting at all if he has severe pressure ulcers. Try to find a physiatrist who will assess his contractures (not "constrictures").

                        (KLD)
                        Originally posted by ladybyrd043@hotmail.com
                        I visit him quite often and talk to him on the phone every day encouraging him. And, a psychiatrist comes in to see him regularly.

                        Just noticed this, and wanted to be sure you knew the difference. A physiatrist is a physician specializing in physical medicine and rehabilitation. (I didn;t know anything about this before I was hurt.) Since it was an important part of her advice. I figure your response about the psychiatrist may have just been coincidence, but just in case you didn;t see the different spelling .....

                        Hope this all get sorted out soon. I ended up with a pressure sore early on in rehab. We just pushed through it, but I ended up with a sore that didn;t heal for 9 months. Healing it FIRST strikes me as a good idea.
                        T7-8 since Feb 2005

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                        • #13
                          Thank you,
                          I did notice the spelling difference, the psychiatrist comment was in answer to her statement about his state of mind due to delaying the rehab. However, I did not know what a physiatrist was so I appreciate the information.
                          The Kindred Center is a part of St. Anthony's medical center, it is one floor dedicated to wound care only. It is in no way seen as a nursing home or meant to be a nursing home. It is in an acute care center and is not long term care.
                          Because of lying down for so many months he at first has had some issues with being dizzy or nauseated when he sat up, but those seem to have resolved over the last week or so. He was able to sit up a week ago, in the wheelchair, for three hours without any problems (special evening--it was his 21st birthday). The PT therapists get him up twice a day, once in the wheelchair and once on the side of the bed, for as long as he can tolerate it...the side of the bed is the hardest for him and he can only manage it for about 20 minutes or so. His blood pressure doesn't seem to be a problem, at least not one that I'm aware of. Although, it was rather low when he was lying down yesterday while I was there. But, "and this concerns me somewhat" the nurse took his BP three times in order to get a "good one" and each time she took it she used his legs instead of his arms.
                          Thanks,
                          Debby, Troy's mom
                          Debby, Troy's mom

                          Comment


                          • #14
                            Sorry. It may be located in an acute care hospital but all Kindred Wound and Ventilator Centers (it is a chain) are licensed and accredited for subacute (ie, long term care=skilled nursing=nursing home), NOT acute care. Ask them.

                            (KLD)
                            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.

                            Comment


                            • #15
                              Medicaid in St. Louis

                              My son, Troy, will be going to rehab at the Rehab Institute of St. Louis this week. I have been talking to Karen Reeve about his stay there and because he is on medicaid he only gets 30 days at their facility.
                              If he needs more rehab then they typically send patients to the Missouri Rehab Center in Mount Vernon, which is 211 miles away. My understanding is that good rehab is dependent (not exclusively)--BUT IS MUCH BETTER FOR THE PATIENT---if the family is involved in the process. Moving him that far away means that we won't be able to be involved at all. We won't be able to be there to learn what we need to in order to bring him home.
                              So, is there a facility in or around St. Louis that accepts medicaid on a month by month approval that IS GOOD...another activity based rehab...that will give him what he needs and be close enough that we can be a part of his recovery?
                              If anyone else has had an experience with dealing within the medicaid guidelines and made it work for them please let me know. I'm running out of ideas here.
                              I have already contacted two state reps and a senator (I know them all personally) and they're looking into what can be done, but I'm hoping that whatever information I get from everyone--from personal experiences to their aid--that I can find a program that works for us and gives Troy what he so desperately needs....the best chance at recovery.
                              Thank you,
                              Debby, Troy's mom
                              Debby, Troy's mom

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