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

  1. #1

    Question 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 at 11:51 AM. Reason: forgot closing remark

  2. #2

    Thumbs up

    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

  3. #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

  4. #4
    Senior Member
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    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 at 12:21 PM.

  5. #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 at 03:56 PM.

  6. #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.

  7. #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.

  8. #8
    Quote 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


  9. #9
    Senior Member TomRL's Avatar
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    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

  10. #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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