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  • #16
    Originally posted by David F View Post
    So it looks like my Uncle will be on a plane to Shepherd sometime this week.
    David
    This is great news! I am sure he will do well. It is very likely with what you say that he will be weanable from the vent, and Shepherd knows how to do that. Glad you are all making this decision...it is the best thing you can do for him right now. Don't let him get discouraged. He has a long way to go, but he can do it. Get him on-line here as soon as they start working with him on computer use at Shepherd (this should be part of his OT program).

    (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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    • #17
      We had a oyung man unjured here in Bellingham, Wa. a number of years ago. His mother is a ER nurse and working at our local hosp. when they brought him in. Her immediate response was to get him to Sheperds even though the Univ. of Washington and other rehab faciites were litlerally 90 minutes away.

      IMO, I feel you made the right decision in sending him to Sheperds. May he continue to improve and you staying strong.

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      • #18
        My uncle is on his way to Shepherd need advice

        My Uncle Pat has a C4 C5 complete injury. He leaves in the morning for Shepherd. I read in some older threads that they are not as aggresive with completes. Iwas wondering if there is anyone that give us some advice on making sure he gets the best while there. Programs, rehab etc....


        Thanks David.

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        • #19
          I think he will be in very good hands David. Great that he is going to such a good rehab.
          Will he have any family there with him?

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          • #20
            I am a Shepherd Complete Alumni albeit a much lower injury. L1 burst complete. By "not as aggressive" what do you mean? I came to find them to be very aggressive. I will say that they focused more on showing me how to live in spite of my injury and less on getting me walking again. So far in my case their statement that the chances of walking again were "not impossible but not likely given the nature of my SCI" have proved true. I have had virtually zero return of function or sensation. I am 5 years post. Each injury is completely unique.

            Be happy ya'll are going to Shepherd they are highly regarded and the spirit and energy there is awesome. Very positive. Good luck.

            I will say your uncle is in very good hands. They have a very good rerspiratory program and a very good record at weaning off vents.

            Tell us some more about your uncles situation.

            Sorry to hear your uncle was injured. I am very glad you have found this web site. It is very helpful and informative.

            Grandin
            L1 Complete - Injury 3/12/06 - Grateful to be alive!!!!

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            • #21
              David,

              I agree with LindaT and Grange. We were there with an incomplete injury but worked along side complete injuries. They are very aggressive with every patient. As Grange says, they focus on what the patient is able to do and will teach your uncle new ways of doing every day activities in a new way. Every SCI is unique. Hopefully, he will have a family member there with him. Remember that they have accomodations for family members and encourage hands on every step of the way. They will teach that family member everything they need to know about how to make sure his physical needs are met once he goes home. They do focus quite a bit on ADL's - Activities of Daily Living and getting the patient out into the community and introducing them to recreational activities. All of these will be different than how he did them before but are essential to his long term quality of life. When he leaves there, he will be amazed at what he can do. They tend not to focus on what you can't do but on how you can do things going forward. He will also become comfortable in "making his own way". In other words, figuring out what works for him.

              Bottom line, he could not be in better hands. Alma Shepherd has created a wonderful center. --eak
              Elizabeth A. Kephart, PHR
              mom/caregiver to Ryan-age 21
              Incomplete C-2 with TBI since 3/09

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              • #22
                sheppard is one of the best SCI rehabs in the world, he will be in good hands.....this will be a fact...not to worry about that..

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                • #23
                  David,
                  Shepard has a great reputation and two young men from my area have been there in the last few years. Both were hockey injuries, one on a vent. They got excellent rehab and made major progress on life skills in a supportive environment. Think of it as getting into the Harvard of SCI injuries. It is a good move.

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                  • #24
                    Thanks for all the words of encouragement. My Uncle, his wife and her sister went on the flight to Atlanta. He had a rough first night last night. Hopefully tomorrow will be better.

                    David

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                    • #25
                      I don't think anyone ever has a good first night after a move like that, but hoping tonight is much calmer for him and that he settles in quickly.

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                      • #26
                        Just wanted to update everyone on my Uncle. He is still down at Shepherd. His condition has improved some. He is off the vent and his secretions have slacked off some. He still has the trach in and unfortunately cannot go outside cause of the pollen. He is having a difficult time managing his body temp. Real hot one minute then freezing the next. Much the same with his physical condition, he feels good for a while then lousy.

                        He has been real frustrated with therapy. Real slow pace and zero improvement in new movement. He really want his hands back!

                        Had a meeting with his Docs and case manager and they surprised us with a planned discharge date of May 5th. He checked in on the 22nd of March. I realize he has limited rehab days in his insurance plan but my Aunt ponied up a large chunk as well. The Docs indicated there is not much more the can do and would be wasting his money. Some of the family feel as if we are getting the bare mins at Shepherd? I feel like they are doing a good job personally.

                        So the plan is for him and my Aunt to move into one of Shepherds facilties for a week and let them live on their own and get adjusted. Is a week enough?

                        My Aunt and Uncle live in Alaska. Will he be able to fly that far. 4 hrs to SEA then 4 HRS to Anchorage then another four hour drive to Homer. How hard is it to stay in a hotel in his condition? How about to and from the hotel? What about the flight itself? How do you manage with cath and bowells? Hopefully a couple of family members in addition to my Aunt will make the trip with them. We are sreiously freeking out about the logistics of all this. Shepherd is supposed to take him to the airport for a dry run so that will help and is great service.

                        Realistically,when he gets home home may caregivers will he need daily to help my Aunt? Not a lot of medical services where he lives and the closet major hospital is a four hour drive.

                        We have not started any renovations to the house yet. So concerned about all this as well.

                        Thanks for any advice.

                        David

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                        • #27
                          Oh David, I can hear the worry in your voice and understand your fears of all of the logistics.
                          The body temp reguation is something my husband still deals with 2 1/2 years later-as do many here.
                          Are they working with teaching your aunt everything she will need to learn and your and uncle to direct his own care? Is there a family service worker working with them to get the right equipment ordered for home? Will they help make the flight arrangements?
                          I did not even realize I had a death and dismemberment plan through my job which covered a percentage of my spouse until someone asked me to look into it. Being a quad fell into being fully dismembered.
                          I ask these questions because these were some of the most helpful things that were done for us.
                          The truth for our situation is that some of the toughest part is finding and keeping good aides. It was tough to realize I could not do it all alone and after some complications ( he has a lot of respiratory issues) we had no choice.
                          Finding doctors with knowledge on SCI in our area tough too.

                          I learned to pick brains. Even if the rehab at our local hospital would not have been suitable, I now call one of the nurses there who steers me in the right direction or pulls strings to get a hoyer lift in the exam room when needed.

                          He entered rehab Nov 13th and was discharged March 5th. I remember thinking that was so soon.
                          He was pretty sick for a first few weeks.
                          Our deepest wish was also that he would ge this hands back. Fixing and fishing were what he did best. Sadly, this was not to be and no amount of agression by anyone could change this fact. We accepted everything in small increments.
                          Sorry I don't have much advice, and my experience limited.
                          Please keep us posted and best wishes to all of you.

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                          • #28
                            David, these are all good questions that you should take up with his case manager and team at Shepherd Center.

                            Keep in mind that intensity and amount of therapy does not have a direct impact on amount of return; neither does how hard he works at it or wants it to occur. Therapy can help to maximize what he has, or does with what comes back naturally (if any). All quads want the use of their hands, but wanting is not sufficient. Six weeks is the average amount of inpatient acute rehabilitation time that insurance companies are currently alloting for persons with tetraplegia. I agree this is usually not sufficient, but it is a reality that we must deal with.

                            Given the distance he will be from Atlanta, I would ask if you can get approved for more than one week in the Day program. This will of course be dependent upon funding (either insurance or private pay) for these additional therapy and housing costs.

                            He should not need skilled nursing care when he returns home. He should be considering PCA (personal care attendant) care, which is generally a lay person who is willing to learn to do care such as bowel care, catheterization, range of motion, skin inspection, transfers, bathing, dressing, and other assistance with ADLs. Family members and he should be trained by the Shepherd staff in how to train a caregiver to do these things. Hiring can be a challenge, but frankly, has gotten easier for us with the increased level of unemployment in our area. It will be important to find out the going rate for such caregivers in your area. In my area (Southern CA) it is from $12-16/hour. Getting his care organized so that he only needs a few hours in the AM, and then again perhaps an evening person to get him into bed. This is predicated on a family member being available during the rest of the time do do things such as a catheterization (in his chair) and assistance with meals. Craig's List, recruitment from local nursing or therapy schools, and running ads in places like the Penny Saver have worked for many people. A job description and contract are highly recommended, as is a background check. You may want to check out the Caregivers forum for ideas on recruitment and hiring of these people.

                            Ideally, in a flight back home, you can get fairly straight through flights with roughly 2 hours between flights. Shorter than this makes it very difficult to make connections given that he must be the first to board and will be the last person off. Be sure that you learn the safe and proper way for him to be lifted from his chair to the aisle chair so someone can supervise this. There is wide variation in how well airline or airport staff are trained in this area. He will need the aisle chair and two lifters. He should gate check both his manual and power wheelchairs, and sit on his wheelchair cushion. He will need his wheelchairs in Seattle. Do not let him be put into an airport wheelchair!! The Shepherd staff should cover all this with him and anyone who is flying with him.

                            As far as bowel or bladder management when flying, if he is doing intermittent cath he can either put in an indwelling catheter for the duration of the flight until he gets home (easiest) or someone can cath him in his seat under a blanket (easiest with touchless type cath kits). There is no way to get him into the bathroom on a modern jet in spite of the claims of some airlines to have accessible bathrooms! For bowel, talk with his physician and nurse. Many eat a low residual diet for several days prior to flying, start taking Imodium, do bowel care before leaving, and pray that they don't need to do anything until they get home, when a laxative may be needed to get back on track. If he is on a decent bowel program now and on an every other day schedule, the schedule may need some adjustment.

                            Staying in a hotel in Seattle or Anchorage may be problematic. This would require both accessible transportation to the hotel and back, an accessible hotel room, and perhaps the rental of a lift if he needs this for transfers. That would also require a non-platform bed, or even the rental of a hospital bed. It would also require him to sleep on a mattress that is perhaps not the best for his skin. Bowel care can be done in bed with a Chux under his bottom, but is less than ideal.

                            How is he getting from Anchorage to Homer? Will he have his own accessible van?

                            (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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                            • #29
                              Thanks for the information it is all very helpful.

                              I believe that Shep. is doing all the proper education. It is just hard for the family to keep informed and we have lots of questions that we don't want to burden my Aunt and Uncle with.

                              My Mom and Brother are travelling down tomorrow so may questions will be resolved then.

                              As far as the trip to Homer we are currently shopping for a vehicle. Ideally All wheel drive.

                              My Aunt is attending a van seminar at Shepherd this week for some ideas.

                              David

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                              • #30
                                That is good that your Mom and brother are going out there.
                                It was a bit of a shock and eye opener when my husband's family came out.

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