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Rehab questions for Father with recent SCI (long . . . sorry!)

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  • Rehab questions for Father with recent SCI (long . . . sorry!)

    Hello all,

    I have been snooping here on these forums since my Dad's injury about 2 months ago. It has been a great source of information as well as a source of comfort. Now I find my self with some questions on rehab I need clarification on.

    The brief story:
    A little less than two months ago my father was struck by a car while riding his bike, was thrown from his bike and landed on he head an face. Fortunately he was wearing his helmet which saved his brain, but his neck bore the brunt of the impact. He suffered a type II odontoid (dens) (similar to that of Mr. Reeves) fracture, and the force of the impact drove the dens posteriorly into his spinal cord causing a severe spinal contusion at the C2 level.

    He was placed in a SICU, and his spine initally placed in traction via halo and then surgerically corrected. He was placed on ventilator support.
    He spent a little over 3 weeks in the SICU (which he thankfully does not remember) and has spend about 3 weeks at an LTAC where the team there attempted to wean him off the vent.

    His neurological function as I understand it: incomplete tetra: Intact sensation (light touch, heat cold, pain) thoughout, gross control of his left leg (quads mostly), a little on his right, some emerging control of his left fingers (can barely wiggle). I am uncertain of his chance to be weaned from the vent (his diaphram control, etc), right now he is still vent dependent.

    (so much for breif!)
    So my question concerns the next steps in his rehabilitation. I am in the odd position of possessing enough knowledge to be dangerous and not enough to be useful. I am a fourth year medical student who completed a rotation in rehabilitaion earlier this year (PM&R) and spent some time in a SCI floor (At metro health in cleveland). The main thing I took away from that experience is that nurses, PTs, OTs, and physiatrists that work with a large number of SCI patients make a huge difference in the early rehabilitation experience of patients. Also the peer support from a dedicated SCI floor is helpful too.

    Thus I would like my father to go to one of the model systems for SCI rehab or one of the larger more well known rehab hosptials for his intial rehab. He is currently in an LTAC in a smaller Ohio community. The docotors there want to send him to a a local CARF certified hopsital or to a nursing home.

    The things that seem against my dad in the process:
    1. He is 78. In my opinion when people see that on paper they make certain assumptions. I know my dad as a retired physican, active in mensa, who raised 10 kids, has 28 grandkids, who did the applacain trail after, retiring, and was hit while training for a bike ride that would take him cross the state of Ohio over 2 weeks at 50 to 60 miles a day!

    2. he is still vent dependent which limits him to rehab hospitals that take vent dep. patients.

    3. Metro in Cleveland only has two vent capable rooms - none are available for another two weeks.

    4. I am currently rotating in Boston, and a vent bed in spalding has become available. His case worker in ohio doesn't seem to feel this is an option!?

    Question 1:
    Should we try and wait for the cleveland bed or try and get him to Boston (which is a tenuous option as Spalding hasn't looked at his chart yet)?

    Question 2:
    The LTAC wants him out in about a week - so I'm not sure where he can go for a week if he was to go to cleveland. If he goes to a local rehab hospital can he then transfer to another (i.e. would this be a problem with medicare)?.

    Question 3:
    What is a good way to get a incomplete tetra from Ohio to Boston if that turns out to be an option.

    Question 4:
    If he seems to be headed to vent dependence, how soon should I push for a phrenic nerve stimulator?

    I could go on and on . Any info would help! Thanks!

    Last edited by salinmooch; 07-22-2008, 11:55 PM.

  • #2
    Sorry you had to find us, but your dad is lucky to have you as an advocate for him!

    First, is your dad a military veteran by any chance? If so, the VA SCI System of care would be a great option for him. One of the major problems for a patient at 78 is that Medicare provides at most 4 weeks of rehab for a SCI, and that is rarely enough, esp. for someone of his age and degree of disability.

    Personally, if you can manage the wait for MetroHealth, and they are willing to provide information to you and his current setting about continuing with appropriate SCI vent weaning (which is different from non-SCI vent weaning), I would stay with that plan. See if there is a Kindred facility in his area. While I am not a Kindred fan in general as they lack SCI experience, they are used to vent weaning in the subacute setting. Downside is that he probably would not get any PT or OT there.

    The only way to get him from Cleveland to Boston would be to private pay for an air ambulance. Very expensive, and not covered by Medicare or most other insurances. They really cannot force him out of where he is now, so if you firm up the bed at MetroHealth I would negotiate with them to extend his stay until that bed is available.

    Generally 12 months is the wait to consider any type of phrenic or diaphragmatic pacing, but Cleveland is the hub of that research, so you should be able to get good advice there.

    Is he in a halo?

    Does he have shoulder shrug?

    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.


    • #3
      First, sorry about your dad Salin, this is a great spot for answers. Great Dr.s, Nurses, and other "straight from the horses mouths" so to speak.
      Nurse thank you and everyone for their astute knowledge of sci, and taking the time to be on here to help us all.


      • #4
        Thanks for the quick reply.

        I am to talk with Metrohealth tomorrow via conference call with some family there present in person. I will see if I can get something firm from them to take back to the LTAC to see if he can stay longer.

        He is unfortunately not a eligible for the VA. He did have the foresight to provide himself and my mom with good insurance, and he has a substantial umbrella, although I do not know the details and SCI rehab and care is not cheap as you know! There is a future possibility that the at fault driver who stuck him's insurance will assist as well, though that is another ugly part of this situation (that insurance is currently stonewalling):

        He had a halo for about 1 week, but his fracture was quite unstable, so it was fixed with a screw.

        He does have a nice strong shoulder shrug.

        Frankly I think a challenging rehab would just the thing - he says he is ready for more challenge than the small amount of PT he gets now (pass on by lip reading siblings of course).


        • #5
          I forgot to tell you to download the clinical practice guideline on Respiratory Management in SCI from the site you can find linked from the "sticky" topic at the top of the Care forum. You can also find several other helpful CPGs related to SCI, all written and published by the Consortium for Spinal Cord Medicine (and funded by the PVA) at the same site.

          When you say he is not eligible for VA care, does that mean he is or is not a veteran??

          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.


          • #6
            Keep asking questions and you are doing a great job advocating for your Dad


            • #7
              Thanks for the kind comments!

              Thank you for the info as well - I will check out the clinical practice guidelines and disseminate to my family. Knowledge is power!

              I should have been clearer - My dad is not a veteran.

              I spoke with MetroHealth today and they did give him a place starting August 8th. Now to negotiate with the LTAC. I looked up Kindred as well.

              Since his insurance situation is not completely clear to me currently, I am trying to think of coices based on medicare.

              Do I assume correctly that Medicare will only pay for a limited number of transports?


              • #8
                Transports? You mean critical care ambulance rides (required due to the vent)? Yes, but generally if they are going to a different level of care that is not a problem. They will not pay for air ambulance though.

                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.


                • #9
                  Yes I meant critical care ambulance rides. Apparently the LTAC wants to send him to the local Rehab hosp. and then to Metro health. That does not make a whole lot of sense to me.


                  • #10
                    Like I said, fight them on this. They can't actually send him anyplace against his will/consent.

                    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.


                    • #11
                      Fighting we are. I cannot see how sending him to rehab at the local place and then to Metrohealth is in his best interests.

                      Do you have some ammo? I plan to conference in tomorrow but I wanted to give some ammo to my siblings who are on the seen.

                      The main argument the case worker is giving is this:
                      Medicare will only cover up to 35 day in which he needs to move to an "adequate" rehab center that is available.


                      • #12
                        I hope your conference went well today.

                        The SCI nurse is absolutely right - fight like crazy to stay until your rehab bed is available. They can't force you to go.

                        My father's story has some similarities to your own - 65yo previously healthy/working/walking 5 miles a day man hit by a taxi - fractured T11/T12. Once many health care providers saw his white hair and beard, and heard "spinal cord injury" among his many other injuries, their goals for him changed. Wrong. Unfair. After one months in an ICU in NYC, an air ambulance ride (what a saga...), and one month in an ICU in Chicago, I pushed/begged/screamed/cried to make sure my father did not get transferred to anything but a spinal cord floor at the best SCI model rehab center in the area. You can do this to.

                        You have to keep emphasizing that for your father to have the greatest chance of maximum recovery, while minimizing the complications that occur rampantly when you are in acute care/rehab after SCI (DVT, pressure sores, infections, impaction etc...) it is critical for you to be at an appropriate facility. I had the further pressure of being told that it was not possible to transfer from one rehab hospital to another, so I didn't want to take the chance that we could get stuck at an inexperienced rehab with no escape.

                        It was very stressful trying to "stall", but it helps if you do have an actual guaranteed bed on a given date. And the closer that date gets, it's easier to stall. Because, hopefully the people at your current hospital are decent people and they understand your dilemma and actually may not thwart you actively. However, others will.......

                        - Keep calling Metro Health every day to see if a bed opens up earlier, and get an advocate on their end to speak with doctors/case managers at your facility to emphasize why it is important for your father to go to their facility. If you spent a rotation working there before, find ANYONE (an attending you worked with? nurse?) to make a call on your behalf.

                        - I mentioned every possible medical issue that my father had that was still "active" and possibly worth of a higher level of care (i.e. staying in the hospital longer) - monitoring a hematocrit that had dropped, treating an infection, unstable respiratory issues etc... That did satisfy the social workers/case managers at times. Your knowledge of medicine will help you here. It also reminds them you are watching very carefully..... and this helps.

                        - They tried to scare me by saying that our insurance company might refuse to pay for further care, but that was just silly because honestly Medicare doesn't even look at the bills until weeks/months after my father was discharged. And for such a critical injury, after such a prolonged stay, the risks of this are incredibly low unless the doctors purposefully write in the notes something damning. And again, most people (even doctors!) are decent in the end.

                        Your goals should continue to be getting your father the best care he can possibly get, and your medical knowledge and ability to advocate for him will be an incredible help. This site is fantastic. The Critical Care Guidelines from the VA are very valuable. Right now make sure your dad is getting appropriate DVT prophylaxis, bowel regimen to prevent impaction, and skin care (turning Q2H on a low pressure air mattress, checking skin daily for pressure sores, PRAFO boots to protect heels from pressure).

                        I assume you have a lawyer involved to work with the insurance companies. Unfortunately, that is quite important too, and they can assist with facilitating contact with all the different insurance sources and figuring out who pays what. You will learn that even your own insurance companies will not want to pay, never mind the insurance company of the driver who hit your father...

                        And most importantly, tell you father every day that things are getting better, that he will get better, and he has to keep fighting. It sounds like your dad is a tough cookie, so start making him work. Tell him to make a fist, shrug his shoulders, lift his arms, try to wiggle your toes. Practice your neuro exam with his participation. Get the physical therapists to teach you the range of motion exercises now and start doing them.

                        Good luck.


                        • #13
                          sorry.... forgot one thing.

                          I was a little surprised to hear you guys mention that Medicare had a cap on the number of days of inpatient rehab. That isn't true - unless there is something different about Medicare in the state of Ohio. My father was in inpatient rehab for 4 months, and Medicare didn't call once to complain. As long as you are making progress such that the therapists can justify your stay in their notes (and the trick is making sure your rehab program shares your goals!!!), you can stay in rehab for as long as it takes, and Medicare will cover it (but see below...). Of course, it will still never seem to be enough...

                          This is my understanding of how it works. To Medicare, inpatient rehab days are counted as equivalent to inpatient acute hospital days -- you have a certain number per year where you pay a total deductable of about $1000 for all of those days. I believe this year it is about 3 months. So all you pay for 3 months in the hospital/rehab is $1000. But if you have a secondary insurance (perhaps from your dad's prior employer or a Medigap secondary plan he pays for monthly), this $1000 is covered by that insurance. However, after 3 months, the copays start to add up per day - jumping up to something like $250 PER DAY for the next month, and for month 5 the co-pay is like $500 PER DAY. But again, if you have a secondary insurance, these co-pays are paid by them. If you need to be in the hospital/rehab for more then 5 months, then it gets a little tricky.... Medicare doesn't pay anymore unless you start dipping into what's called your "lifetime reserve days".... a few more (4?) months of Medicare coverage with the $500 co-pay per day that you will only have available once in your life. So if you use these days up, and later in your life need to be hospitalized for a long time again, these wont be available to you. However, if there was ever a time to use some of those days, acute rehab after a spinal cord injury would be the time! AND all Medigap plans give you an extra 365 lifetime reserve days (perhaps your dad has one of these plans as his secondary insurance already? Or he can likely enroll in one of these plans later if needed). If these issues are unclear in your family, I recommend finding the state office in Ohio that helps to answer questions about Medicare issues for state residents - they can help explain whether a Medigap plan is available/suitable for you and how to enroll if needed. Also, the case manager in rehab may be helpful. Unfortunately, I didn't have much luck finding help from our case managers.... Better to educate yourself.

                          But this is an issue for later. Just keep it in mind. Do not let people tell you once you get to rehab that your father should have different goals because of Medicare/his age. Of course, things are different when you are older, and the road will be slower and more challenging at times. But hospitals/physicians can be punished severely if it is determined that they are treating patients worse/differently because they are on Medicare rather then private insurance.