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Thread: Hope lost?

  1. #71
    Hi Harberrat, This is great news! Off to Kessler, a great hospital! I am excited for him. Time for rehab and to get moving, to start healing, learning, and being around people who know about spinal cord injury, from the PT, to the OT, physiatrists (physical medicine rehab docs)...he will benefit. I understand about wanting to know and it being hard being patient. I am the same way...It sometimes is just a difficult system to negotiate, but I have no doubt you will be able to do this very well. The best part is you are going to keep us informed about how he and how you are doing the whole part of the way? :-) Hoping he has a safe transfer and at the start, meets great people there... best of luck tomorrow! One day at a time..
    Last edited by med100; 02-15-2010 at 09:35 AM.

  2. #72
    Harberrat,

    Certainly continue to hope and/or pray your brother has functional recovery, but even if he doesn't, life can still be good.

    But regarding recovery, having good shoulder shrug does sound like your brother may be C3 incomplete, or maybe C4 (I'm no expert). BUT -- even at the original classification of C3 complete, your brother has a good chance of being weaned from the vent. My understanding is C3 people should have access to their diaphragm, which enables spontaneous breathing, which is what's needed in order to wean.

    I know this because I'm a C1-2 and do not currently have spontaneous breathing! The smiley face there might look out of place, but I'm trying to point out the humorous irony of how I know your brother has a good shot at being vent-free (part of the sense of humor that can be necessary to cope!).

    That said, despite being vent-dependent, I do feel like I've had a good life these last 12+ years that I've been injured, which you can read about on my website (which I do using voice software) here:

    http://www.lookmomnohands.net/My_Ful...ort_Groups.htm

    On a side note, I am comfortable on my vent, yet something that can further enhance my quality of life is a relatively new Diaphragm Pacing System (DPS) which I am actually having a pre-surgery consult about today (to further assess my candidacy for the DPS).

    Hopefully your brother will be able to wean, but if not, the DPS has been a big plus for quite a few vent users, and former vent users (I have a friend who has been on the DPS essentially 24/7 for over 5 years now, and he loves it). Hopefully you won't need info regarding the DPS, but we have a pretty thorough thread going here:

    http://sci.rutgers.edu/forum/showthread.php?t=114614

    Today is a good day -- the day your brother goes to Kessler!

    Rehab is about learning to live with the new condition, while of course also trying recover as much as possible.

    But don't forget, there are a lot of doctors out there who are trying to "cure" us with function-restoring therapies. To read about some, a good place to start is the CareCure "Cure" forum here:

    http://sci.rutgers.edu/forum/forumdisplay.php?f=32

    I wish your brother the best of luck -- and God bless!

    Here's the signature I use with most of my email:

    Bill Miller :-)
    C1-2 Quadriplegic with a 221 High Bowling Game
    Co-founder of Manufacturing Genuine Thrills Inc. d/b/a MGT
    My blog: http://powerwheelchairusers.blogspot.com
    Business website: http://www.ikanbowler.com
    Personal website: http://www.lookmomnohands.net
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

    Checkout the below CareCure thread about a new way to bowl!
    http://sci.rutgers.edu/forum/showthread.php?t=87066

  3. #73
    Wow Bill, is that an impressive post!
    Harberrat, you have a ton of support here. Lets us know how today goes for your brother at Kessler!

  4. #74
    Bill, Thanks for your post that life is still good even on a vent. Please let me know how the DPS appointment goes.
    Dave had pneumonia this summer and we have decided to keep the trach so I can suction him when needed. He is on the vent only at night so he gets some good deep breaths to the lower part of lungs. I really think this has kept him out of the hospital. We also use the Vest twice a day to loosen things up.His highest break was C4, but was explained to us there was damage to C3 area and I heard C2 mentioned too. Half of the diaphram was paralyzed, but that started functioning several weeks into his injury. He had no voice a few months after he came home with the trach this summer (he did not have a trach or respitory problems for several months after he left rehab) which was frustrating for everyone. The local ENT seemed afraid to deal with him (that is another story)When we went to Craig for re eval in Nov he was fitted with a different type of trach and now has a fairly good voice most days with the passey muir (sp) speaking valve.
    Sorry to hijack your thread Harbarret. I just had to jump in with this.
    I am really excited that your brother is on to the next step.
    Last edited by LindaT; 02-15-2010 at 04:03 PM.

  5. #75
    Hello Harbarret. I guess I'm following up on Bill's post from earlier. I'm a C2/3 vent dependent quad and this week will be 25 years post injury. Like Bill, I'm also working toward the pacemaker system, but am a little further behind due to unpredictable midwest winter weather.

    Your brother starting into rehab will be full of different experiences, he's very fortunate to have you and your family helping him. As you know, each case is very different, but it's important that he learns the new way of doing things.

    I was injured at a young age, so only know life with SCI. However, I run my own business maintaining and designing web sites. I obtained one degree while living on campus and am now working toward my next. I also do disability awareness talks at schools and get to volunteer as a camp counselor every year at a camp for kids requiring breathing assistance, such as a ventilator.

    Life with an SCI has it's difficulties, but it doesn't mean a life with no hope or expectations. I'm glad to hear he's being moved and will start the rehab process soon. Hopefully he'll be able to get off the vent, but there are alternatives if he can't. Keep us posted and we'll keep helping wherever you need.
    C2/3 quad since February 20, 1985.

  6. #76
    Hey guys,
    Thanks for all of the support. Unfortunately today is not as happy a day as I had hoped. I saw my brother on Saturday and all was great. Sunday my sister told me he had a fever and infection (not sure where) and his trip to Kessler has been postponed. I know he is really upset about it as we all are. I will keep you guys up to date. Thanks again for the support.

  7. #77
    Trainman, I am not sure if I should say, congrats on 25 years... long road.. and also on school and work!

    Hi harberrat, sorry about your brother's fever and infection. Do they know what caused it? Hoping and praying he will feel better soon and off to Kessler :-)

  8. #78
    Quote Originally Posted by LindaT View Post
    Bill, Thanks for your post that life is still good even on a vent. Please let me know how the DPS appointment goes.
    Dave had pneumonia this summer and we have decided to keep the trach so I can suction him when needed. He is on the vent only at night so he gets some good deep breaths to the lower part of lungs. I really think this has kept him out of the hospital. We also use the Vest twice a day to loosen things up.His highest break was C4, but was explained to us there was damage to C3 area and I heard C2 mentioned too. Half of the diaphram was paralyzed, but that started functioning several weeks into his injury. He had no voice a few months after he came home with the trach this summer (he did not have a trach or respitory problems for several months after he left rehab) which was frustrating for everyone. The local ENT seemed afraid to deal with him (that is another story)When we went to Craig for re eval in Nov he was fitted with a different type of trach and now has a fairly good voice most days with the passey muir (sp) speaking valve.
    Sorry to hijack your thread Harbarret. I just had to jump in with this.
    I am really excited that your brother is on to the next step.
    LindaT, to avoid getting too off track with the thread, you can checkout my consult experience here:

    http://sci.rutgers.edu/forum/showthread.php?t=114614

    I'm certainly glad Dave & you have a respiratory routine that is working well for him. The Passy-Muir speaking valve has been a huge blessing for me too, and it's a reason why I didn't immediately pursue the DPS (because the speaking valve and my vent setup allow me to speak essentially without a pause). You can read about my respiratory routine on my website here:

    http://www.lookmomnohands.net/overview_of_my_care.htm

    But let's keep this thread on track, so this please PM or email me with any questions or comments.

    Bill
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

    Checkout the below CareCure thread about a new way to bowl!
    http://sci.rutgers.edu/forum/showthread.php?t=87066

  9. #79
    Harberrat, how is your brother feeling?

  10. #80
    Quote Originally Posted by med100 View Post
    Harberrat, how is your brother feeling?
    He left the hospital this morning at 11 am for the rehab. I have not heard an update as of yet (stuck in work till 7pm). I am thrilled that he has gotten there finally and hope he is doing well, thanks for asking. I saw him yesterday for a while and assured him the rehab would be great. I will post the latest when I find out. Unfortunately I work till 7pm tomorow again and no time to go an hour or so north once I get out, plus I got to get home cause my wife works on thursdays and I have to be home for the kids. Taking Friday off to go to the rehab and see him.

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