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C1 & C2 Injury

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  • #31
    Originally posted by SCI-Nurse View Post
    If she can open her eyes on command, try to establish a way to communicate with her. The usual is 1 blink for yes, 2 blinks for no. Work on this and see if you can get anything at all established. If you can, she may be conscious but locked-in.

    If she is still on the ventilator, I suspect they will want her to go to an LTAC (long term acute center) which is like a nursing home. She will be unlikely to get much therapy there. Kindle is a for-profit one that has facilities all over the county. It would depend on which facility your Kaiser contracts with.

    If she is in locked-in, can she still benefit from therapy and if so which center type?

    Her Kaiser insurance is from her work so it is her primary insurance right now, but she now has MediCal is her secondary insurance which will become her Primary Insurance after Kaiser ends or if we cancel it since I am discovery that many facilities/doctors/hospitals take Medical.


    • #32
      A major acute brain injury rehab center (ideally CARF accredited for brain injury and SCI) would be appropriate, including the rehab program at UCI, or Rancho Los Amigos in Downey. I would keep the Kaiser until they cancel it. There is much that Medicaid (Medi-Cal in CA) does not cover as well.

      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


      • #33
        My moms condition seem to worsen the past few days, her heart rate was in the low 40s and blood pressure was low. She also got an infection that spread to all her organs. They are giving her Primaxn, Vancomy Cia, Kepra, Phenobarbital, and Dilantin. They just took her off Phenobarbital 2 days ago to see if her condition improved.

        Yesterday was a good day. Her heart rate reached 70s which we hadn't seen in 3 weeks. She also started opening her eyes and can focus on us and blink when we tell her. She also started moving her chin.

        I also had a very negative experience yesterday. The Neurologist had a strong talk with me about "taking her off life support". She was very persistent to the point where I felt harassed. She was telling me that she would be at piece and that not all the money in the world could heal Christopher Reeve and that was my mom's condition. She said she was in a vegetable state and could stay like this her whole life and that we only want to keep a warm body. I told her that was not her case and we had been told by other doctors at LAC/UCI that she had brain activity and told her our faith is strong and it will be God's will. She said "God is not keeping her alive, only all the machines". Told her God gives people the wisdom to create all these machines. She said "He also gives people the wisdom to create bombs, weapons, .." After she said this I told her she was hurting me and to stop. I then went and filed and complaint against her and told them I didn't want her near my mom again.

        To all the families of these injuries, how do you best deal so doctors leave you alone on this subject?? It is very painful when they talk to us like this. Do you have any advice to make it stop?? To us, every life is worth preserving no matter the age. My mother is 56 years old and we will love her and care for her no matter her condition until God decides to take her to heaven.

        SCI Nurse: Thank you for your advice. We will keep Kaiser. All this insurance stuff is new to us.


        • #34
          That doctor was extremely obnoxious.
          Last edited by LindaT; 10-27-2011, 06:24 PM.


          • #35
            Gabriela, how heartbreaking for you and your family!

            Even though you have strong religious convictions, I think it might be advantageous to leave them out of conversations with the doctors. In order for your mother to receive the best care possible, you and her medical team need to be on the same page as much as possible, and most doctors are all about the science; so if you have been advised by the medical staff at LAC/UCI that your mother has brain activity, and if you have reason to believe that her blinking and new chin movements are responsive and not simply reflexive, those observations will probably serve you best in consultations with the doctors.

            You say that your mother will blink when you tell her to...if, at some point, your mother becomes able to use blinks to communicate in a consistent, reasonable way that medical staff can verify, you might consider asking for her input about treatment decisions. Such questions can be phrased in gentle ways that don't require final, undeviating answers, and the process might make her feel more empowered in the situation - as well as help you in negotiating this tricky course.

            Best wishes to each of you, as always.
            Last edited by Bonnette; 10-28-2011, 01:55 AM. Reason: wording
            MS with cervical and thoracic cord lesions


            • #36
              Not much has happened since yesterday. They told us that she would not be able to speak again a few days after her accident. I have heard a snoring sound sometimes when she sleeps and today I heard like a squeaking noise coming from her mouth. Do these sounds mean anything or signs that she will be able to speak again? She moves her chin and tong sometimes. Any ideas on the topic of learning to talk again in the future?


              • #37
                What type of trach does she have? If it has a cuff (balloon) she will be unable to speak because of that. She may not even know she's unable to speak. Took me a while to figure out no sound was coming out when I was trying to tell someone something. It's all such a fog when you're that sick.

                For now, I would venture that the most important thing is resolving the pneumonia.


                • #38
                  Yes, she has that ballon trach type. I feel awful as she seems to be screaming or wanting to talk but nothing comes out except a squeaking noise.


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                  • #39
                    Gabriela, just to add to what Scaper1 said, it is not possible to speak as long as your Mom has a cuff-style trach with the "cuff up" which means the balloon is inflated, and no air can reach her vocal chords. Without air around her vocal chords, speech isn't possible.

                    To give her a chance to speak, the cuff needs to be deflated and the vent volume should be increased, but in my experience, doctors are reluctant to try that when a patient is not very medically stable. But having a high-level SCI doesn't necessarily mean she won't be able to speak (I'm actually dictating this by voice).

                    Now, if indeed she has a brain injury also, then that might affect or prevent speech -- BUT, I don't know how that could be determined until she wakes up, unless it's proven that she doesn't have brain activity. I'm not a doctor and don't know much about brain injuries.

                    Prayers for all.

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

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


                    • #40
                      Hello Everyone,

                      I have a new situation in which I need some guidance. It appears that the hospital's goal is to take her off life support. They already told us that they will not do chest compressions (restart her heart). They said they have certain rules where they can overturn families decisions when patients are unconscious and they think it is in their best interest.

                      My mom is on so many medications right now that of course she is going to be unconscious. We have seen her respond when she was at the other hospital with her eyes when they took her off most of the medicines to observe her. We know she is still there. They've told us that we will never be able to take her home because it costs too much money and she will be in a nursing home the rest of her life.

                      The entire ICU is against us. Even the social worker has made mean nasty comments and told us we need to listen to doctors and her heart is pretty much done without the medicines. She said the other hospital was only doing tests to bill Kaiser. They did a few tests on the first 2 days and then they have not done anymore tests and refuse to do anymore activity tests or pretty much anything. She has had activity tests at the other hospital and they did determine that she had activity but didn't get to fully evaluate her because Kaiser moved her to safe money. I feel like we are running out of time and they are not giving her time to get better.

                      What I need is stories of your situation or your loved one that was unconscious and came out of it and are enjoying life even though you have some type of paralysis so I can show the hospital. You can post them or email them directly to me

                      What can I do to avoid them from taking her off life support?

                      Thank you,


                      • #41
                        She is still at UC Irvine? No one has the right to take her off the vent or other treatments that are considered life support without family or patient consent (did she have a durable power of attorney for health care?). Have you requested an ethics team consult? You may need to get an attorney, or even go to the media.

                        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


                        • #42
                          Other people's stories are not going to convince the hospital. You need good legal advice, pronto - as in ASAP, immediately. Initial consultations are usually done at no charge. The hospital can only be stopped by threat of legal action if they are determined to override your wishes. It seems pretty clear that your mother needs to be transferred to another facility, if only for skilled observation. In your shoes, I would call the local bar association for referral to a malpractice attorney (or whatever other specialty might apply).
                          MS with cervical and thoracic cord lesions


                          • #43
                            She is at Kaiser in Anaheim. The doctor told me yesterday that they would not do chest compressions and they were going to take her off Dopamin, but this medicine has been helping her with heart heart rate and blood pressure so we are scared. She still has it but only very little and they are slowly taking it off. Her heart rate has dropped below 40 when she didn't have it in the past.

                            She had no power of attorney for health care written. Not sure if this helps, but she is a Christian, so religious wise it is clear what her wishes are and her family.

                            I am meeting with the ethics person from Kaiser tomorrow.

                            Yes, we want her out of that hospital but they said no doctor will take her because of the liability and her current condition. She has Kaiser insurance so we feel trapped. I just applied for Medical for her as well.

                            Media and legal advice-Good ideas. Will start working on these.


                            • #44
                              The in-house ethics consultation is a place to begin, but don't go alone - have a witness with you, and take notes.

                              See if your mother's insurance policy includes the option to obtain an independent second opinion - many of them do. The doctor needs to be one of your choosing, not a mouthpiece for the hospital.

                              Consult an attorney right away, no matter what you do. The hospital and insurance company have teams of lawyers protecting their interests, and lay people can't match them for firepower. Obtain professional legal counsel.
                              MS with cervical and thoracic cord lesions


                              • #45
                                It might be a good idea to have a video camera at hand so you can video her responses to you if she blinks on command. That is strong and compelling evidence. Of course it can be strong and compelling both ways if she does not respond so make your own decision on that!!!

                                My heart goes out to you and your family. I know there are people here that wish they could give you answers to your questions. Your mom's future is not known to any of us. I encourage you as a Christian to take the questions no one can answer to Him on your knees. Keep praying and keep asking questions here. We all feel compassion for you.

                                L1 Complete - Injury 3/12/06 - Grateful to be alive!!!!