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Need advice for new injury in CA

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  • Need advice for new injury in CA

    I have been corresponding with a father of a new SCI. The son is 23 and actually has 2 neck fractures. He has a C1/C2 and also a C6/C7. I don’t know his ASIA score. He was injured in a MVA on 3/6/2006. He is in a hospital in CA near Bakersfield. Today the dad told me that they are looking at transferring him to Barlow Respiratory Hospital in hopes that he can be weaned from the vent. I am encouraging the father to get him to a model SCI facility. The family really wants to send him to Craig, but the insurance company wants him to stay in state. I don’t know anything about Barlow except that their web site looks like they mostly treat patients with primary lung disease. I wonder if they have enough experience with SCI? The family has been told that their son is breathing on his own some, and they want to give him every opportunity to wean if possible. Any advice for this family? I live in the mid-west and my husband rehabbed at Craig where he was weaned after 7 months on a vent, but I just don’t know what advice to offer since I am so unfamiliar with the resources in CA. What about Rancho, would that be a better place for him. Do they have a vent weaning program?

    Thanks for any input.


  • #2
    Trish, I am so sorry to hear about your friend's son. What a rotten deal SCI is! My son did his rehab at Santa Clara Valley Medical Center. (He had a C2/3 injury) He was originally in a rehab hospital that had very little experience with SCI and we were told he would probably never be weaned from the vent. Fortunately, our insurance company worked with us to get him transferred, and I am forever grateful. Within weeks of his transfer he was successfully weaned from it. I can't say enough good things about the medical staff, nursing staff and therapy staff at SCVMC. They were all top notch.

    I hope things go well for this young man. It is great they have you to talk to.


    • #3
      Trish, a son of a friend of mine did his rehab at Santa Clara Valley Med. Center and did really well. They were very happy with their program. Telll your friends to hang in there and to really fight for the best SCI rehab they can get to. We are in So. Calif. and my son did his rehab at a facility that knew very little about SCI! It was a big waste of 3 months!!


      • #4
        I would try to avoid a respiratory "rehab" center like you describe. These units are pretty much glorified nursing homes. They will know little about SCI, and less about SCI weaning (which is much different than weaning someone with COPD or other lung problems). It is unlikely he will have any age peers there, probably will get little or no therapy, and is at risk for developing pressure ulcers, contractures and other complications that could hold him back or even prevent him from getting into an appropriate rehab program.

        Both Santa Clara Valley Medical Center in San Jose and Rancho Los Amigos in Downey are Model System SCI Center with excellent reputations in ventilator care and weaning. If he has insurance, push to get him to one of these centers. If he has none, it is a little more complicated, since both are county hospitals and sometimes will not take out-of-county Medi-Cal patients. This is not a time to hesitate or back down. His future is at stake. Being further away from home may be where he gets the most appropriate care at this time, and it will probably require quite a fight with the insurance company to get here.

        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.


        • #5
          I did my rehab in Rancho; It might not be the easiest place to get into as there are usually no beds, but it is one of the best places in the state for sure. The people there really know how to deal with the insurance companies to get what needs to be done paid for. I'm on Medi-cal & CCS so its usually a pain in the butt to deal with having things paid for but the people at Rancho never had a problem with making things go through.
          The staff is absolutely amazing in almost everything they do. Tell him to get to Rancho if he can because its an amazing place.
          Don't think of yourself as an ugly person, just a beautiful monkey.
          Always remember: if the world didn't suck, we'd all fall off.


          • #6
            My dad too had breathing problems,actually he had alot of things going on at one time ontop of SCI which kinda took a back seat for a while trying to get other things cleared up,I also preparred myself for him to be on a breathing machine for the rest of his life and he is 68,so tell your friend to hang in there and take it week to week he will get stronger.