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New to site w/ 27 y/o son that recently shattered C4

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  • New to site w/ 27 y/o son that recently shattered C4

    I don't know where to start?? Just knowing that I have found a wonderful resource has me in tears. My son has a C5 Asia B injury from last July. We live in Wisconsin. He was transferred to Craig Rehab in Denver in August and was discharged on Nov. 17th, 2010.

    We return to Denver,in June, for his 6 month evaluation. We are wanting to locate a place for intensive exercise based rehabilitation and looking to evaluate three possible sites for now. They include Shepard in Atlanta, Craig (we possibly could stay after the one week of evaluation), and Kennedy Krieger in Baltimore.

    He has had issues with AD, secondary to a blocked SP catheter. We are wondering if anyone avoids tap water due to the crystallization that builds up in the catheter?

    He has just had his last PT session this past week. He was not able to continue as he did not show progress. He has an FES bike and a standing frame, although I think he needs to use them more often. He also has passive and active ROM twice per day.

    I would be very grateful for any assistance that is provided.

    With sincere gratitude and thanks,

    Sam
    Last edited by Sam4Eric; 04-10-2011, 11:51 AM. Reason: forgot closing remark

  • #2
    It is normal to get AD from a plugged catheter. The two most common reasons for AD are bowel and/or bladder related issues. Drinking tap water is a really good idea for assisting with both the bowel and bladder. Within reason, the more water the better.
    If he continues to have crystalization, just change his catheter more frequently to avoid blockage.
    www.MurGallery.com

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    • #3
      Sam, I am glad you found the site. I was a C 6-7 at 18. HOpe you find all the answers and support you need here.

      Regards,

      Deb
      "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” ~Carlos Castaneda

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      • #4
        We live on the east coast and our son was under 17 so craig was not an option.Shepard in Atlanta gives you 2 options, 1- medical based physical therapy upstairs,2- exercise based therapy downstairs. the problem is they wont let you do some of each. Krieger mixes their approach between medical and exercise based therapy. We were very happy with project walk but they aren't covered by insurance. As we increased our sons physical activity the sediment in his urine became much less of a problem.
        Last edited by nrf; 04-10-2011, 12:21 PM.

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        • #5
          Hi Sam, My husband was at Craig for 4 months. We have been home 2 years now.
          He is C3 complete.
          It's great your son can use the standing frame and FES.
          When you go for the re eval prepare for a very busy week!
          Maybe you can get some suggestions when you go there.
          We had an issue while he was at Craig with the SP being clogged by sediment. He now used a 24 FR and have not had issues.
          Good luck!
          Last edited by LindaT; 04-10-2011, 03:56 PM.

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          • #6
            with an SP, it's wise to drink a lot more water than usual to help keep the tube clear. and i quit drinking tap b/c there are too many minerals in there, but that only plays a small role in the tube clogging up. drinking more water is more important. i have a reverse osmosis system.
            http://www.dsportsman.com

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            • #7
              just an FYI, exercise has nothing to do with a spinal cord injury healing. it helps by building what muscle movement you have left and improves balance, flexibility, strength & circulation. exercise is not a cure.
              http://www.dsportsman.com

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              • #8
                Originally posted by Sam4Eric View Post

                He has had issues with AD, secondary to a blocked SP catheter. We are wondering if anyone avoids tap water due to the crystallization that builds up in the catheter?

                With sincere gratitude and thanks,

                Sam
                Hi Sam,

                I cut out part of your post as I wanted to reply to this portion. I used to work in Municipal government. The water is tested weekly and a report is sent to EPD. Our water (here in Plains) is pumped from a 1,900 ft. deep water well. Flourine (protect teeth) and chlorine (kills bacteria/germs) is all that is added. A lot of people think bottled water is better. I would never drink bottled water as is not regulated by the government or EPD. Many places use tap water. Some use water from creeks...but guess where deer, boars, racoons and many other animal deposit their urine and feces? Yep!!!

                When I was first injured, I had a supra pubic inserted because of the bladder stones I was producing. I also suffered a lot with these catheters stopping up from a lot of buildup. (I was using a 22fr.) My urologist told me this would be temporary as I would not have to keep it permanently. 4.5 years later I had it removed and have not had a problem since.

                Good luck to Eric.
                Millard
                ''Life's tough... it's even tougher if you're stupid!'' -- John Wayne

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                • #9
                  I know at first many people seek all the therapy they can, but the reality is we all eventually plateau. Some exercise is good to maintain what he has, but eventually your family needs to start discussing long term goals. Your son quite likely has 40+ years ahead and making his way in the world is important. Additional education, job possibilities and the future in general. I know it seems overwhelming at the moment, but if my dad hadn't told me he expected me to return to college (and maintain my gpa) I don't know where I'd be now. My prayers will be with your family.
                  Tom

                  "Blessed are the pessimists, for they hath made backups." Exasperated 20:12

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                  • #10
                    Hi Sam, I'm also from Wisconsin and also was injured last July, however our cases differ from there. I'm glad you found the site and hope that you get some advice on what facility to choose.

                    Sending my best wishes for your son's future and for yours.

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                    • #11
                      Welcome Sam, sorry to hear about your son. Today's technology is so much better in the last few years. Tursfully, your son will continue to gain and flourish.


                      I have a good friend (C5/6) who went to Shepherds and came out pretty strong. Also many who went to Craig. I think all the ones above is pretty top notch.

                      Stay strong, we are here when you need us.

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                      • #12
                        We also live in Wi, Madison to be exact! My brother is C5 complete also and I took him to Sheperd in Atlanta after a dismal rehab in Madison. His accident was 10 years ago and I am his caregiver. My only advise is to go where there are the most peers, since that seems to help the most . Attitude makes the biggest difference in my opinion, w/c sports help many to progress both mentally and physically. My brother had the best rehab experience in a smaller rehab in Knoxville, he was more ready to progress due to other injuries and less medication for one but, importantly the patience and caring of his physio team there. Jim also has an S/P tube and does well, I went ahead and put in an all-house filter so he can drink all the water they need to keep things running smoothly. I don't know were in Wi you are but if you need anything please PM. Madison has a pretty good sports swim/bike program I believe that is connected with the University. And when you go to Craig try to look up Chris Chappelle he is also C5, I think, lives independently, counsils and has a very good positive attitude. Best to you, Deb

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                        • #13
                          I have to disagree with nrf. Ryan did his rehab at Shepherd in 2009 for three months and has since gone back one for day program (could not do day program immediately due to orthopedic issues). He not only received medical support (went straight to ICU after being in trauma hospital for 10 weeks) but also received intensive PT, OT, and speech. He got there as a mess in more ways than just the physical. One of the things they work on there is maximizing what you have and learning new ways to do things. They want all patients to leave there as independent as possible. Ryan is an incomplete C-2, ASIA D so his experience was a little different. I will never forget one teenager that was only there for a few weeks and Ryan asking why she got to go home already. We had to have the conversation that her injury was very different from his (high level complete) and that there really was not anything else they could do for her. They focus on teaching the patient and the family how to make sure that physical needs are met, getting the home ready and as accessible as possible therapies that will benefit the patient no matter their current ability level.

                          Rehab at Shepherd is a full time gig. Therapy both for inpatient and day program are from 8 am to 4 pm with a one hour lunch break. Ryan did not take a lunch break while inpatient as he was not allowed to eat and usually spent that hour doing e-stim on his throat and a breathing treatment (summer in Atlanta is brutal for someone with asthma). They also work on developing recreational interests in a modified manner.

                          We were lucky in that insurance covered (after some fighting-they wanted to sent him somewhere cheaper but not a model center) Ryan's inpatient and his day program stays. WE have since changed our primary insurance (hubby changed jobs) and they do not cover Shepherd as they are not "In network". Ryan wants to go back in the fall for gait training with the lokomat and lokomotor. He will have medicare be them and there will be some coverage there that should help.

                          Unfortunately with high level, complete injuries, there is little that can be recovered. Focus shifts to maintaining health, being as independent as possible and forging a new life. Life may seem to be over but it is just different and different can have good elements too. It will never be the same as before the injury but that does not mean there is not a high level of quality of life to be had.--eak
                          Elizabeth A. Kephart, PHR
                          mom/caregiver to Ryan-age 21
                          Incomplete C-2 with TBI since 3/09

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                          • #14
                            Hello "Sam,"
                            Welcome to the Care Cure Community. It would be a great to get Eric involved in on this forum. There are a number of people here around his age and disability level.

                            All the best,
                            GJ

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                            • #15
                              ekephart,

                              I don't want to be argumentative but, after your initial inpatient rehab (which is very good at shepherd) many recommend a therapy that builds on what you did as in-patient, plus adds a vigorous workout of all the muscles that don't work as well. shepherd offers both through 1- their medical based pt,ot and speech, 2- their "beyond therapy program" is a exercise based therapy. However Shepherd does not allow a combination therapy between the two gym's. I don't think that will be a problem at krieger. I don't want to tell you your business, but if I were you with a ASIA D injury I would do anything I could to find a exercise based therapy and try it for a week.

                              for instance,Shepherd has a locomotion program in their medical based rehab, but you can only use it if you are in the medical based rehab-not beyond therapy. I think the reason why they structure it this way is to satisfy the insurance companies.

                              Ask shepherd about their beyond therapy program, ask krieger about their inclusion of exercise based therapy with medical based therapy covered by insurance then draw your own conclusion.

                              Above all good luck and best wishes of good health and return of function whatever path you choose.

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