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Thread: optimism

  1. #1

    optimism

    Wrote a lot a little earlier and have some more. I forgot to mention that my son's (Anthony) sci is incomplete. I also wanted to mention how optimistic your website information is. Where do you get your information from? After hearing what the doctor said today, your information seems imposible. We know that fast rehab is essential; but my son has been so sick from other complications, respiratory, fevers, broken jaw that he has not had any rehab for over 2 months now. We do range of motion as much as we can at the hospital bed and started this right away. PT comes in once a day but for only about 20 minutes for stretching and OT comes in infrequently. It is starting to look like he will not be able to get to any rehab facility now probably for another month. I don't want to sound like your information is not true it just seems that one day you hear the worst and then the next you can read or hear something totally different. I'm starting to think nobody knows what they are talking about. Maybe that's too harsh. Everyone's injury is different and wait and see? Again any info is so much appreciated. I also want to maybe change his attending physician that sees him now at the hospital. He was put in charge of my son because he is the trauma Dr. that did his surgery to his windpipe only at time of admittance to the hospital. What are the doctors called that treat sci patients; would this be the neurologist?

    Cindy Waters
    Tampa, FL

  2. #2
    Senior Member dogger's Avatar
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    Cindy , like you say , every injury is different . i am a C5/6 incomplete , 12 years post. i was told the normal spiel , '' if you are lucky you will be able to use a manual chair ''. i am a ''walker '' who lives by himself . the broken jaw problem , i had a broken wrist which was never worried about . rehab today is miles in front of what it was 12 years ago . then whatever recovery you had after about 3 months , ''was all you were going to get ''. i am still getting slight sensory recovery . there are many doctors etc who still adhere to ''what you have is all you get '' , but there are others who have a more optimistic outlook nowdays . if you read posts here you will see people are getting recovery many years post through a good exercise regime [ Larry Watson ( and even though he is a lawyer i trust his observations ) is a good example of this , which he has documented in the exercise forum ].i hope this helps .

    thank you dogger

    P.S. sorry Larry , i coundn't resist the little dig ..

    every day i wake up is a good one .

  3. #3
    A physiatrist is a doctor who specializes in physical medicine, including rehab. I did a quick search on Yahoo using the criteria +physiatrist +Tampa More than 200 results were listed.

    I'm 6 years post-SCI. I started working out about 6 months ago. I have experienced quite a bit of return since I started.

    You're doing fine, Waters3. Keep it up. Keep searching for information and medical assistance you can trust. Ask us here at CareCure if you need info or support.

  4. #4
    thank you dogger, i would write more but exhausted. I bought a laptop to use while doing almost 24/7 at the hospital with my son. talk later.

    cindy

  5. #5
    Cindy~

    Your post brought back a lot of memories for me. My daughter was injured March 31, '99 at the age of 18. She is a complete T11/T12. That first year was a living hell, what with her complications. We used to say, "If we could just deal with the SCI...." so I know how you feel.

    First, you've found an excellent resource. You will learn more here than anywhere else. You have people here who are kind, compassionate, and experienced in all aspects of this horrible club your son has just joined. Take advantage of us! You are doing the right thing by educating yourself; keep it up. Ask questions. Be demanding. Don't worry if the nurses think you're a bitch. Embrace your inner bitch, because you are now your son's best advocate for competent care! (See some of lass's posts! ) Get plenty of sleep, and don't forget to eat. Take a few minutes to cry and kick something (soft) and then...get back to it. This is such a special hell for a mom...

    Hang in there because it does get better. If your son's injury is incomplete, then NO ONE can predict what his amount of return might be. Each injury is different. And rtr is right: you need to get a good physiatrist on board (Also called a PM&R doctor, physical medicine and rehabilitation).

    You can do this.
    Vicky

  6. #6
    Hi, Cindy,

    Dogger, rtr, and SciMom all gave wonderful and helpful clues and suggestions. With your son still being in an acute care hospital, the trauma doc is the best one to coordinate all his care right now, and call in consults as needed in other specialties - ie, surgery,pulmonary, etc. It sounds as tho your son still has to be 'stabilized' from an acute care perspective, and can't really begin rehab until the acute problems are handled. Rehab is hard, and takes a lot of strength just to get through the workouts!

    Have you started inquiring about rehab facilities? It's important to get him into a good, 'CARF' accredited rehab center, even if it means you'll need to travel to be with him while in rehab. If you need help with this, let us know, or do a search here for the best ones.

    My son is a C4-5 quad, five years ago this coming November. He was in the acute care hospital for a month, battling pneumonia and collapsed lungs, before being transferred to rehab. While there, his 'primary' doc was the Trauma doc, with pulmonary and neurosurgery as consultants. The only therapy he received while there was ranging, as you said, and then towards discharge, they started getting him onto a 'tilt table' to get him used to sitting a little again, and help with the 'orthostatic hypotension' (blood pressure falls when sitting up after lying down).

    Everyone's also right in saying don't listen to the docs about what he'll regain or if he'll regain it. They don't know - I think that out of 'compassion', they tell us there's no hope of recovery to prepare us for the worst, so that whatever small amount of recovery there is, seems like a miracle. I don't fault them for that. Live every day 'one day at a time', and take the good that comes with each day and embrace it.

    I know your heart is broken; as moms, we spend our whole lives 'fixing' our kids; now, all of a sudden, here's something we can't 'fix'. Be there for your son, but also be there for you; burnout and total exhaustion comes very quickly (this is the voice of experience here!). Take a little time to do the special things you do to make yourself feel good - shopping, church, reading a book, soaking in the bath - whatever it is that gives you peace. You'll be able to go back into your son's room renewed, and be stronger for it. I'm sure your son is as worried about you as he is about himself, so keeping yourself strong will ease his mind, too.

    These forums are the best around - anywhere - we're all here to help and support each other, and we all have 'been there', and understand. Keep checking in; the support is here, along with the answers to any questions you may have.

    Jackie

    _____________
    Tough times don't last - tough people do.

  7. #7
    hello Cindy,
    i have been reading your post (posts)and what can i say hun,,i feel every word you are saying.
    my son jordan is 17, he was shot in the back. he is a T5 complete.
    as Vicky(sci mom) said in her post"this is a special hell for us moms"....i live in toronto so i'm not really sure if any info in regards to care here would be any help for you.
    i tried to email you earlier but the address was i guess not correct could not be delivered.
    all i can say hun,just hang in there and don't take no for an answer. ask question over and over. i have learned that no one tells you nothing nor voluntiers any info you have to be pushy and in some instanses just rase some hell.
    my heart goes out for you and your family
    andrea

  8. #8
    Guest
    my brother was c5-6 sci with head trauma and broken jaw, arm and all facial bones. he was in a coma for about three months, during which he had facial surgery and his jaw wired for 5 weeks while in halo traction. he was on a resirator for 5 and a 1/2 months with pneumonia four times. he now breathes, talks, eats well. it took a long time to wean him off the vent, but it was sucessful. i was there every day, suctioned, coughed and encouraged him. you need to take care of yourself, go home at night and sleep so you can be there over the long haul. you are doing a great job. keep up the range of motion, get occupational therapy to range arms and hands. we just went back after three years to visit with the nurses in neuro trauma-they were amazed, and said that all patients should have advocacy. i want you to know that i am thinking of you and that with hard work, mountains can be moved.

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