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Thread: My dad is in ICU with 3 spinal injuries!

  1. #11
    Santa Clara Valley's SCI rehab program will be able to assist with getting him moved safely. They are very used to this type of care and needs. They have their own ICU so he does not have to wait until he is off the vent to get moved there. Work with them and push your insurance company to work with them too. Good luck and keep us informed of his progress.

    (KLD)

  2. #12
    I have been a C2/3 quad, on a vent, for over 20 years. To say that he has no chance to live several more years with many abilities shows that they aren't experienced with SCI.
    C2/3 quad since February 20, 1985.

  3. #13
    Update....We're in touch with Santa Clara and they sound wonderful! I have a meeting with the doctors where he is now, tomorrow, so I'm hoping to get the process going then. Santa Clara people said they did NOT want him weaned from the ventilator--they want to do it themselves.

    One clarification--perhaps you can help me know what to say to his pessimistic doctors. They say that new spinal injuries at this age are the impossible ones--if he had been injured 40 years ago, he'd probably be doing just fine now since he would have adjusted to the changes in his body. But they say that, since he is used to a very active lifestyle, the abrupt adjustment now is the reason why they believe he won't be able to make it..... The current doctors also said that, since he only has 1 of his 4 limbs working right now, he won't even be a candidate for rehab. (That sure didn't sound right to me!)

    I agree with the person who said that there's no way to know what the choices are, unless we give him the opportunity to work with an experienced team to maximize his functioning......

    Anything else I need to say/not say tomorrow when I meet with the pessimistic trauma doctors and get the ball rolling for transfer?

    You folks are fabulous!

    DorAnne

  4. #14
    Thanks, everyone...

    Thomas, you really articulated what I'm thinking when you said "You'd really have to actually go through the rehab first to have any idea of what your choices were in fact."

    I've been in touch with Santa Clara today, and they sound absolutely wonderful for his situation. I'm hoping to get him transferred there ASAP!

    I'm meeting with his current pessimistic trauma docs tomorrow.....Couple of questions: They told me that he is not a candidate for rehab because he only has 1 of his 4 limbs moving right now. What do I say to that?

    2nd question/clarification: They say that if his injury had happened 40 years ago, he'd be fine now. But they believe that, because he's a new injury at 72, he will be unable to adjust to the changes and that's why the skin &/or lungs will get him..... Do you know people with new injuries over the age of 65 who have done well, despite paralysis? Any literature I could throw at them?

    You folks are fantastic!

    DorAnne

  5. #15
    You don't have to explain yourself...Just say that you disagree with their entire negative approach, and that so does Santa Clara Valley SCI Center (and experts on this forum if you want to quote us). Don't worry about what they think, since they obviously don't know what they are talking about. Ask them how many of them are board certified in Spinal Cord Medicine (I am sure it is none).

    People who have NO MOVEMENT of any limbs are still rehab candidates, so that just shows what they don't know. The stuff about 40 years ago is also just so much BS. The fact that he was in such good shape is in his favor...there is no scientific basis for them to say the sudden disability after being in good shape is the worst situation. In fact, those who are active and motivated, and who have family support like yours are the perfect rehab candidate.

    Just tell them that you and the rest of the family have made up your minds and that their hospital and "program" is not what your father needs, and that you will be moving him from there ASAP.

    I agree that SCVMC will do a much better job weaning your father. They are experts in this area. Get him moved ASAP.

    Once you move him, I would encourage you to write a letter to the hospital director going into detail about how negative this experience has been for you and your family. Send a copy to the risk management office and to the office of the chief of staff too (and for good measure, send a copy to the Joint Commission for Accreditation of Hospital Organizations too). I am dying to know which hospital he is in currently!

    (KLD)

  6. #16

    Update on my dad with 3 spinal injuries

    Thanks to all of you, I had the courage to stand up to the pessimistic trauma surgeon, and insist that we wanted to prepare my dad for transfer to Santa Clara's rehab unit. They were actually pretty funny (if it wasn't so serious)..... They started out saying that he was not a rehab candidate and that his Rancho scores were too low, and that his pressure ulcer would never heal (from laying on a tool belt too long before he was found), and that no neurosurgeon would consent to do his spine stabilization surgery--but when we mentioned that we had already spoken with Santa Clara and that it sounded like he was fine for them, they suddenly realized that his Rancho scores were great, and that his pressure ulcer would be healing soon, and that, amazingly, they had a different neurosurgeon who would be willing to do the stabilization surgery. They also went into great detail about how fantastic Santa Clara is, and that they refer all their rehab candidates there..... ODD! This meeting happened on Wednesday.

    They put in Dad's trach on Thursday, and on Friday his stabilization surgery was done--from above T5 to below L1.....Huge surgery, but apparently very successful. As soon as the pressure wound is healed, he should be ready for transfer to Santa Clara.

    Questions now:

    1. Any suggestions to speed up the pressure wound healing? (it's on his sacral area)
    2. Anything that can be done to minimize pressure to that area when he's sitting up? He's on the special bed now that constantly changes the pressure points...Is there an equivalent item that can be used for the seat of a cardiac chair?
    3. Any suggestions on minimizing the possibility of surgical wound infection? That's what the neurosurgeon who did the surgery is the most worried about....

    Thanks so much for your support and ideas!

    DorAnne

  7. #17
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    DorAnne,
    Sorry no real answers to your questions. I just want you to know that you and your family are in my thoughts and prayers. I am so glad he is doing better.

  8. #18
    Senior Member Timaru's Avatar
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    As you say, if it wasn't so serious it would be hilarious...........

    ......... what a bunch of hypocrites!

    I hope he makes a quick (in SCI terms) recovery.

  9. #19
    Wow. Like Timaru says.
    Good for you for being an effective advocate.
    As to the pressure sore, it's not so much a matter of minimizing the pressure on it, it's a matter of eliminating all pressure on it, all the time, until it is healed. That may present all sorts of difficulties, but really, I don't think there's a choice. SCI-nurse will likely have advice for you on that.
    - Richard

  10. #20
    He should be on either a low air loss mattress or a Clinitron, not an overlay alterating pressure pad, which is pretty much worthless. If on a LAL mattress, he should be manually turned every two hours and NEVER allowed to lay on his back, and this includes having his head up. Unless absolutely necessary to have his head up for ventilator precautions, the head should be kept flat. He should not be sitting in a cardiac chair at all. Insist on getting a good quality reclining wheelchair, and that a custom back cushion be designed to keep all pressure off his sacrum when sitting (horse-shoe cut out of foam, never a donut).

    Nutrition is critical. This should include a high calorie high protein diet. He should also be on a multivitamin. Insist on a wound expert consultation for help with dressings. It can take a long time. Was the tool belt really under his sacrum?? Sacral pressure ulcers are most commonly caused in hospitals by not turning the patient or having them on the correct surface from the beginning, and from keeping the head of the bed elevated too high.

    (KLD)

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