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Thread: Unanswered questions.

  1. #1
    Junior Member
    Join Date
    Oct 2006
    Missouri USA

    Unanswered questions.

    Hello everyone... Gosh, there are a lot of us.... A spinal cord injury is something that happens to someone else, right???? That's not the case! I have thousands of questions. I have learned a lot about our daughter's injury but each day there is something else.

    At the time of the accident she was taken to a trauma hospital in Kansas City Missouri -- then approximately 4 1/2 weeks later she was moved from the ICU unit there to the ICU unit of a long term hospital in Kansas City -- the name of the hospital is "Kindred". Their specialty is getting patients off ventilators and helping them to learn to speak or communicate, swallow or eat and breathe...... I believe she will then be sent to Smithville Missouri to begin the rehabilitation process. She must be able to endure 3 hours of rehab before Smithville will accept her. Most all muscle and fat tissue is gone -- she is extremely skinny weak.

    She has a C5 injury -- the vertebra was removed and replaced with a cadaver and plate -- her halo is scheduled to be removed November 21. At that time the trach can also be removed. She is breathing on her own now with very little oxygen but the doctors will not remove the trach with the halo in place because they would be unable to insert it again if the need should arise.

    The problem is getting her off diprovan -- each time this is attempted she gets agitated (very agitated) and the heart rate and blood pressure goes up to dangerous levels (she had a code blue two weeks ago because of this). She is able to move her right arm and leg with little difficulty but the left side is a lot slower (but there is movement). During the time she has been in the hospital her gall bladder was removed and they have now discovered her thyroid is hyper and it is being treated with medication at this time. I am certain the thyroid may play a big part in the anxiety...

    Is it not uncommon for the "deer in the headlights" fear???? This is about to drive me crazy. ANY information will be soooooooo appreciated. I am so scared...

  2. #2

    Just wanted to say hi and welcome you. Sorry you had to find this board. People here are very caring and knowledgeable, they will be better to anwser any questions as I do not have a SCI. I only wish I could take the SCI from my precious niece and I read daily for any info that may help her.


  3. #3
    I think you mean diprivan (propofol) which is a sedative. The longer she is on this, the more difficult it will be for her to wean. You should ask for a psychologist to help her deal with these panic attacks and help the staff learn how to help her to calm down. It is not easy, but it can be done. It will also be critical to evaluate how much brain injury she had at the same time as her SCI (60% have at least a minor TBI). People recovering from a moderate severe TBI can be agitated, and this would not be the appropriate medication to use for this. A TBI specialist could recommend other appropriate drugs such as resperidone if this is the case.

    It is common to be a be fearful and paniced when on a vent. I would definately want to be sure that she does not have autonomic dysreflexia that is the cause of her high blood pressures. Often in non-SCI centers the staff is clueless about this condition, which comes from pain someplace in the person's body, and which can be fatal if not correctly treated. You can download information about this from this page. Download both the consumer version for you and the family and the professional version for her team. Insist that they read it.

    I would try to get her out of Kindred ASAP. This chain of subacute nursing homes generally has no SCI specialty knowledge or skills. Be sure she does not develop a pressure ulcer there! Be sure she does not develop contractures (generally PT and OT are NOT available, and the nurses will be clueless about this). They generally do not know about the proper methods for vent weaning for people with SCI which is very different from their usual patient. I would encourage you to download and read and share with her team there the clinical practice guidelines on respiratory management and SCI which you will find as a sticky at the top of the Care forum here.

    One the vent is gone, there is no reason that a trach has to stay in until she is out of the halo. We take them out as soon as possible (often with the halo still in place) to help prevent the complications of long term trach use. She certainly should be capped well before then and if needed, an Olympic trach button can be used for suctioning and to maintain the stoma, but this has many fewer side effects.

    I would also want to be sure that she is going to the correct rehab center. The only CARF accredited spinal cord injury programs in your state are here:

    Company Name: Howard A. Rusk Rehabilitation Center, LLC
    Address 1:315 Business Loop 70 WestAddress 2:
    City:ColumbiaState/Province:MOZip/Postal Code:65203

    Company Name:Missouri Rehabilitation Center
    Address 1:600 North Main StreetAddress 2:
    City:Mount VernonState/Province:MOZip/Postal Code:65712

    Company Name:St. John's Mercy Rehabilitation Center
    Address 1:615 South New BallasAddress 2:
    City:Saint LouisState/Province:MOZip/Postal Code:63141

    This is the only Model SCI System Center in MO:

    Missouri Model Spinal Cord Injury System.
    University of Missouri/Columbia.
    One Hospital Drive, DC046.46.
    Columbia, MO 65212.
    Public Contact Phone: 573/882-5711 (V), 573/882-7971 (TTY).
    Fax: 573/884-2902.

    Other centers may have a general rehab program and take care of a few SCI patients occasionally, but they will NOT have the expertise in SCI rehab that she will need. You may have to fight with her current team and insurer to get her to the right program. Don't just accept who they contract with.

    Also, if you have not yet read these articles by Dr. Young, I would encourage you to do so. You may want to print them out to share with other family members:

    Last edited by SCI-Nurse; 10-18-2006 at 02:03 PM.

  4. #4
    Junior Member
    Join Date
    Oct 2006
    Missouri USA
    Thank you both so much for the information and "shoulder"..... I have printed off the information you suggested and have already made a phone call (Rusk Rehab!). I am not one to back down from a little fight with insurance carriers.

    Thanks again -- this site is simply wonderful to someone such as myself who is totally lost when it comes to the proper care for my daughter's illness. I have a awesome respect for those who have overcome!!!!

  5. #5
    I got hyperthyroid a few months ago. Spent a month in a panic under the covers with my dog, and believe me, anxiety is not my normal state of affairs. So yes, the thyroid could well result in anxiety. I take zanax now if it gets real bad. Are they treating the thyroid? It will make her weak, and skinny, and is a mucle-wasting condition. I'm on a thyroid blocking drug. It's working well, no side effects, people are on this for years w/ no problems.

    She needs to be under the care of a good endocrinologist for the thyroid, as well as her SCI team.

    As always, please check her skin YOURSELF. Listen to SCI-Nurse. She knows her stuff.

    Good luck. You did good finding us.

  6. #6
    I recently read an article that talked about hyperthyroidism post SCI. I guess it happens to some folks and is one of the edocronological issues that can occur post SCI. I will searh to see if I can locate the article.

    If you have not already done so, please call the Christopher and Dana Reeve Paralysis Resource Center at 800-539-7309 and ask to speak to an Information Specialist. They have a well trained and diverse group, several of who have SCI and first hand experience. If you can't call, email. Here is a link to the intake question form. Be sure in your text to indicate that it is a new injury:.

    If your daughter has insurance that might consider coverage at a model SCI program, I would check into those. Shepherd in Atlanta and Craig in CO are very good with weening vent patients as well as working with SCI and/or TBI patients.

    I am glad that you were finially able to post and that you found your way to CareCure. Ask away, the folks here speak from first hand experience.

    Sorry you need us, happy you found us.
    Every day I wake up is a good one

  7. #7
    So sorry to hear about your daughter. I know what you are going through. My son 21 years old was injured last November is a C6/7. Things can get pretty overwhelming - hang in there it does get easier with time.
    One bit of advice- Take care of yourself- you need to be healthy for your daughter.

  8. #8
    Senior Member
    Join Date
    May 2006
    New York
    Mandy, Sorry to here about your daughters injury. My father was injured this January C6/C7 and waiting to find out anything from the hospital or doctors was awful. Then when he was able to cap trac and could talk it was better when visiting at lease you knew what he was trying to tell you. We went about 2 months with him trying to tell my mom something before we got it.

    Getting a hold of the doctors was always very difficult never felt like we were getting any answers.

    Take everything one day at a time. Seeing everyone here makes you realize your not the only one out there going through this.

    Best of luck

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