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My Son Was Discharged & We're Having A Rough Time

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    #16
    Plenty of prayers coming from me...

    Please let Adam know we are all thinking of him here...

    Teena

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      #17
      Bob, I read this thread hours ago, but was on the way out. As I read your initial post I was so taken back that a center would let you guys get discharged w/o the proper care info.. It really is disappointing to know in this day and age that it is still happening. I think that you have gotten excellent responses so far so I won't sound like a broken record. I have some videotapes that I'd be happy to send you on...

      -Overview of Spinal cord injury
      -Family training on skin
      -Bowel management
      -Bladder management
      -Respiratory care

      These were the tapes that I was sent home with from the Shepherd Center and are very informative..

      I also have a Personal Care Manual that is given out by the Shepherd Center. This manual is an excellent tool to have as it can answer most situations to this condition. I was fortunate enough to have had my g/f at the time make copies for the entire family and I have 1 extra if you are interested. Send me a private message with your address if you wish..





      Life isn't like a bowl of cherries or peaches. It's more like a jar of jalapenos--What you do today might burn your ass tomorrow.

      If you ain't laughing, you ain't living, baby. Carlos Mencia

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        #18
        The Shepherd manual is available on-line here:

        http://www.myvitalconnections.org/we...y?opendocument

        There is also this manual available from Thomas Jefferson/Magee in Philadelphia:

        http://www.spinalcordcenter.org/manual/index.html

        This attendant training module may also be helpful:

        http://www.hcinteractive.com/programs/sci/

        Of course the consumer booklets from the Consortium for Spinal Cord Medicine on autonomic dysreflexia, skin care, bowel care, depression, and functional outcomes are also invaluable:

        http://www.pva.org/site/PageServer?p...eneralpubs#cpg

        (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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          #19
          Thanks, all for the suggestions & links.
          Please keep 'em coming.
          I'm trying to disseminate and wade thru evertything. Time is short now.
          I'll get back asap.
          Bob B
          SCI - Parent

          Comment


            #20
            Bob,

            you're lucky I didn't find this site until late in the game, I was sent home alot like your son, and had to learn all rhese things the hard way until now. Now I've found out so much of the iniutial problems I had were not only to me, but the same went for others too. As good as I'm doing, I'm still battling bowel issues, water in the foot among others that I have not quite got a grip on yet. Everyone here has had alot of these things and it is always informative still three years later to read about it. Even today I've got a few things going on, and am riding it out as we speak.

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              #21
              Originally posted by nide44
              Thanks, all for the suggestions & links.
              Please keep 'em coming.
              I'm trying to disseminate and wade thru evertything. Time is short now.
              I'll get back asap.
              Bob, sorry to hear things have gottin off to a rough start. you need to call your insurance provider asap and get a nurse there to see Adam. I came home on tues and my nurse came on thurs, and came twice a week at first, then as needed.

              "But he was pierced for our transgressions,he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed" Isa 53:5

              Comment


                #22
                Rod, the nurse was called and has come twice since he came home Weds.
                Once for an intital eval (Thurs) and over the weekend to get a urine specimin for lab work.
                I thin the Fri episode was AD and so does Adam, but it didn't stop him from calling his brother to take him out on Sat eve.
                He went to the mall to have his 2 y.o.son visit 'Santa'. He made arrangements to meet his boy and the mother there.
                I heard it was a bust, and the kid wouldn't get near the jolly ole elf,
                much less sit on his lap (the reason for going).....screamed and had a tantrum. My relatives have said I did the same at age 2 (and 3 and 4 and.....hated it) So much for Adam's need to get out so soon.
                I'll go tonite to see how things are and help out. I called in yesterday, and there were no major crises to attend to. His mom was there and my daughter had finally gotten out to do some shopping for the holidays.
                (Her first time to do so, & she has 5 kids & a hubby to shop for)
                Bob B
                SCI - Parent

                Comment


                  #23
                  Originally posted by nide44
                  Rod, the nurse was called and has come twice since he came home Weds.
                  Once for an intital eval (Thurs) and over the weekend to get a urine specimin for lab work.
                  I thin the Fri episode was AD and so does Adam, but it didn't stop him from calling his brother to take him out on Sat eve.
                  He went to the mall to have his 2 y.o.son visit 'Santa'. He made arrangements to meet his boy and the mother there.
                  I heard it was a bust, and the kid wouldn't get near the jolly ole elf,
                  much less sit on his lap (the reason for going).....screamed and had a tantrum. My relatives have said I did the same at age 2 (and 3 and 4 and.....hated it) So much for Adam's need to get out so soon.
                  I'll go tonite to see how things are and help out. I called in yesterday, and there were no major crises to attend to. His mom was there and my daughter had finally gotten out to do some shopping for the holidays.
                  (Her first time to do so, & she has 5 kids & a hubby to shop for)
                  sounds like things are getting a lil' better, it"s a big adjustment for everyone not just Adam, getting out alot helped my cope early on so it's good to hear he is going out. also someone mentioned the "egg crate" mattrace topper, good idea I used one early on. ask the doctor about "flomax" or other drugs, it helped me start to urinate on my own.

                  "But he was pierced for our transgressions,he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed" Isa 53:5

                  Comment


                    #24
                    the memory foam mattress topper i think is a little better. and yes, get him out as much as possible. that will help in the long run.
                    http://www.dsportsman.com

                    Comment


                      #25
                      The air mattress was finally delivered and set up.
                      That's one thing out of the way.
                      The Care nurse set up a Soc. Worker to come (next week, I think) - PT & OT have made first visits and an aide was put on the case to come by for a few hours to help bathe and get things done for 3 (?) days a week temporarily to help my daughter get thru the end of the year.
                      Seems everything has to be re-done after the first of the year (orders for aides, nurses, supplies, etc) We'll see if we can get some more help ordered in Jan. I'm on my way right now, to stay with him for a few hrs, while the family goes 'Xmas tree hunting'. I'll update more later.
                      Bob B
                      SCI - Parent

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                        #26
                        When I first got home it was hell, nothing went right. It will get better, took me about 3 months to adjust.
                        Injury Date : Feb. 23rd 2006, c6 Incomplete.

                        Comment


                          #27
                          Hi Bob,
                          Glad to hear that finally things are moving in the right direction. I remember when my son came home it was chaotic, scary, and very stressful. Just hang in there.
                          Tell your son that we are all thinking about him and wish him all the best.
                          My mouth is like a magician's hat, never know what might come out of it.

                          Comment


                            #28
                            BOB.

                            Shit roles down hill , and I know it, best of luck, but I can't say the inexperiences are gonna' happen. Ride it out, try to be calm, things will work their way out, they have too. I just wished I had known about this site, from the get go, it would have been so much easier.

                            Comment


                              #29
                              Thanks, all of you.
                              Yup. its a-rolling downhill allright!
                              And it seems as if we're at the bottom.

                              Adam has gotten out a few times.
                              He went to his work Holiday Party, went out Xmas morning to open presents with his 2 y.o. son (lives with his mom), & has had some buddies over to visit & take him out of the house for a 'walk' around the neighborhood. He hasn't seen a PCP yet, but has an appt. on Jan 2nd.

                              He isn't getting his daily OT & PT sessions, He was 'on a roll' progressing well with them, just before he was discharged. His PT from the hospital was 'in the neighborhood' -last week, & came to visit (for about 2-3 hours ! ) and put him thru a workout. He was in tears, he was so glad to see her and work with her once more.
                              I think that's what he needs right now- intensive work and seeing progress. He's developed another leg kick action on his own, since discharge- as well as some small ankle movement. He's able to use some of his upper trunk, and hooks one arm over the handle of the wheelchair and leans pretty far over, from one side to the other trying to do a change in his position.(He still needs to be turned in the bed every 2 hours, though) He needs work on his wrists and fingers (very little development on regaining these- I think he should have more e-stim).
                              I got in touch with Kernan's (where he was in-patient), for outpatient rehab- and they'll see him right after the first of the year (haven't heard anything about our application to Kennedy Krieger).- but as soon as he rolls in the door, the home care quits - everything! Social Worker, HealthCare RN, OT,PT, aide,- hell, we haven't even gotten ½ way to the applications for handicap transportation the Soc.Worker was supposed to help with, and they're all going to be gone.
                              Not only that, but the Blue Shield Case Worker says he has only 30 outpatient visits per year (still don't have a copy of the benefits, to read the fine print)- I'm really steamed about that. Blue shield Open Access was supposed to send it a week ago. It took 2 days to get to someone who said they would help, but 'nada' on the follow-thru. No copy of his policy benefits has come.
                              We're not sure if he's allowed 30 days separately, or OT/PT combined.
                              What are we going to do after that runs out? He needs that aqua-therapy and the specialized equipment to help recovery, and he can't wait til he gets back to it.
                              If he needs more of a prolonged rehab time & treatment, what can we do to get it?
                              Is he supposed to stay a helpless 'quad' for the rest of his life, when more therapy (than just 30 visits) could help make more of a recovery? I'm hoping he'll be able to walk again- with the right therapy. He doesn't have any salary, but he's getting some disability payments. It could just be over the max. limit, & make him ineligible for Medicaid or any other assistance. I hope he'll get his SSDI application approved, but that won't be enough to pay for therapy on his own.
                              This really sucks ! How can we find a way for him to get what he needs?

                              Bob B
                              SCI - Parent

                              Comment


                                #30
                                Originally posted by nide44
                                Not only that, but the Blue Shield Case Worker says he has only 30 outpatient visits per year (still don't have a copy of the benefits, to read the fine print)- I'm really steamed about that. Blue shield Open Access was supposed to send it a week ago. It took 2 days to get to someone who said they would help, but 'nada' on the follow-thru. No copy of his policy benefits has come.
                                We're not sure if he's allowed 30 days separately, or OT/PT combined.
                                What are we going to do after that runs out?
                                Bob, I had anthem blue cross when I got hurt 2 years ago. My plan covered 50 visits a year. That was ot/pt COMBINED. BUT depending on how the rehab facility submits it, sometimes an OT and PT visit in one day, are treated as one visit.

                                I was also able to extend this limit on a month to month basis with no difficulty at the time. My PT had to submit a letter of medical necessity, and it took about 48 hours to review. She had to do this monthly from the point of running out of visits, until the end of the year when the count was reset to zero. At this time it was considered to be obvious that this was needed, and done repeatedly. (Despite this tho' we had difficulty this year doing the same thing. She kept getting told that they didn't do that NEVER HAVE and never will. My old caseworker (I had been "discharged" from having one) actually asked for the name of the person who told her that, as she was going to look into it. I don't know how this would have played out, as I changed insurance companies at this point, due to my husbands job change.)

                                He should have have a caseworker with blue cross. Mine were very helpful, and appeared to be looking out for me, and my health needs, not the $$ bottom line of the insurance company. They would let me know about benefits I didn't know I had (transportation) as well as medical needs I should be looking into. Keep the caseworker on board as long as possible. She is the one who told me that in situations like mine, PT visits were critical, and would be extended. And I am a much lower leval than your son. The caseworker was also accessible .... she returned her voicemails, and had w direct line, I dodn't have to go through the menus, only to reach someone who didn't know the answer.

                                oh .... rereading this I see he has a case worker. I hope I didn't just have to only nice one in the system.
                                T7-8 since Feb 2005

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