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Thread: nightmare

  1. #21
    No CPAP is not the same as breathing on his own. People with SCI do much better weaning from the ventilator by being off completely (no vent, no CPAP) for multiple short periods of time during the day, then gradually lengthening each of these periods. This builds strength in the respirtory muscles gradually, which CPAP does not.

    I suspect his protein is low because he has large draining pressure ulcers and has not been able to keep up with his body's demand for protein which is increased by acute injury, stress, and trying to heal. Instead of trying to find the cause, the treatment at this time should be to super-supplement his nutrition, and perhaps consider a short course (6-8 weeks) of an anabolic steroid. The safest one to use for this purpose is Oxandralone. Because it helps to build muscle mass, it has been helpful in many people with SCI during vent weaning. It also has been studied extensively as a helpful drug to increase the speed of pressure ulcer healing.



  2. #22
    HI, Cindy,

    Sorry I haven't posted sooner, but we've been in the throes of moving and I've been off the boards for a while.

    My son is a C4-5 with a brain injury, also; his TBI affects mainly his short term memory. He was also on a vent for about 3 months post his accident, and then weaned successfully while at Kessler Rehab. The docs in the acute care hospital told us there was a 75% chance he'd be on the vent forever - so another reason never to believe what they say - they just don't know - no one does.

    Also, like your son, my son's initial CAT scans and MRIs were normal; then, 3 months post, he had a horrid seizure, was transferred to an acute care hospital from rehab, and when he 'awoke' from all the meds, he had no short term memory at all; couldn't remember the accident, or that he was paralyzed. We'd tell him what happened, then five minutes later he'd ask the same question.

    Recovery from a TBI is a long process, and when combined with SCI, it can take even longer. I'd recommend an eval by a neuropsychologist, who specializes in cognitive rehabilitation, as well as the speech therapy mentioned before.

    Here are a couple of TBI websites I've found helpful:

    There are links to TBI boards and chat rooms, and a download of an excellent publication about TBI recovery.

    Hope this helps; feel free to email me if you like, or have any questions. Dealing with the double whammy of SCI and TBI is at times totally overwhelming. Jackie

    Tough times don't last - tough people do.

  3. #23
    Thank you Marmalady for the reply and information on brain injury. Just an update on some things. The injury is on the left side of his brain. It seems that the only thing it is affecting is his unability to form words with his mouth. Everything else is functioning. He can read, spell, understand everything we say and knows what to say but can't. Just in the last week we have seen progress though. His swallowing has improved greatly. Speech Therapy conducted a blue dye test yesterday and he swallows on command now and easily, until they deflated the cuff on his trach. Then the fluid they gave him did not go down correctly. They said they are going to just keep on excersising his tongue, swallowing muscles, etc. I have read up on Expressive Aphasia and Apraxia. It does not seem to be Expressive Aphasia in regards to that he can understand what we say, can read, spell, etc. but more toward Apraxia. Has anyone out there had similar experiences or know anyone who has? or can shed some more light on the situation. If this is the wrong forum to ask are there any forums on this subject that we can talk to people like this one? Also we were told that Anthony could go to Jackson Memorial for rehab since no other facility in Florida would accept him for rehab while he is on the ventilator. Unfortunately he has acquired such bad pressure sores he cannot. We are now trying to get him into the spinal unit at Jackson memorial at least. This will give him great benefits as where he is now is not experienced enough for SCI patients. Does anyone know of any physician at Jackson Memorial spinal unit that we might be able to contact to explain our situation so that his doctor can help us with this transfer. Thanks to everyone.

    Cindy Waters
    Mom to Anthony c4,5,6
    still in hospital, tampa, fl

  4. #24
    These are the people I know there:

    Kathleen Klerk, PT
    Assistant Chief, Spinal Cord Injury and Neurotrauma Rehab Units
    Jackson Memorial Hospital
    Miami, Florida

    Marca L. Sipski, MD
    Project Director, South Florida Spinal Cord Injury Model System
    Medical Director, Rehabilitation
    Jackson Memorial Hospital
    Associate Professor
    Department of Neurological Surgery
    University of Miami School of Medicine
    Miami, Florida


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