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T3 Para Hospitalized w/Sore - Concerned Over His Care

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  • T3 Para Hospitalized w/Sore - Concerned Over His Care

    Hello, posting for a friend. Young guy, T3 para that's around a year post and he's been hospitalized almost since his accident due to a pressure sore in tailbone area and hasn't been able to do rehab yet because of this. He's admitted on the Internal Medicine floor and I'm really concerned with how they're treating him (I've been admitted on the same floor, that's how we met and most patients there are 70+ with dementia taking up a bed awaiting a spot in a care home if you get the idea). There's a long list of issues that make me question his care. But this morning I got a phone call, he was mumbling, saying he was twitching, spazzing, could barely hold his phone, I couldn't make anything over the phone so I went to see him this afternoon. He is a disaster, confused, drowsy, can barely push his chair, drops everything, he almost face planted 3 times just slightly leaning over (how did they even let him leave his room like that I'm not sure). Come to find out they upped his gabapentin dose yesterday, I really hope that's the issue? Apparently docs and nurses were all scratching their heads this morning not knowing why he was having these symptoms. I guess they finally realized he needs more specialized care? He's being assigned an entire new care team tonight - I really hope so because so far:

    - He's had his pain and severe spasms ignored for months, his feet are bloodied from it. He can no longer transfer on his own. He then got accused of seeking pain meds, was cut off all pain medication and put on methadone. This is when he took a dive, could barely push his chair or sit up but they never bothered to find out why. Rehab came by to assess him finally a few weeks ago and they discovered that he had fluid in his spine and that may have been causing the spasms and other issues. Fluid was drained and he says it helped a bit but he wasn't told what the fluid was or why. I'm not sure he's assigned a permanent rehab doctor following him though. Shouldn't he have one? How do you go about getting one assigned when in hospital?
    - His Dr. put him on Flexeril when Baclofen wasn't working - as I understand it, Flexeril is more indicated for muscle injuries/sprains and not to be used long term no? He says it doesn't help.
    - He went from functional and alert to confused, drowsy, sleeps all day, isn't sure what dose of what meds he's on etc. It's a little scary to watch.
    - They cycle him on and off different antibiotics, IV, intramuscular, etc. (for the pressure sore?) and some weeks he's too weak to get up out of bed, sweating, feverish and according to him no one knows why.
    - They say he's allowed to sit up in his chair 2 hrs a day, I'm not so sure that's a great idea if he's got fluid in his spine and on this many antibiotics (maybe from the sore? again, he's too out of it to really know or care at this point, I've asked).
    - He may be on other meds but I'm not sure, again, he has no idea at this point.

    This guy has been doing this alone now, his family lives away, doesn't have many friends around. I'm not sure who can advocate for him cause he's a disaster at this point. I try to visit a few times a week. I think he's given up and he's just hoping he can leave the hospital soon and go back to his family doctor and start rehab. He was really looking forward to rehab but I doubt it's happening soon. He's aware his care is questionable but I'm not sure he knows how to advocate for himself or perhaps he's so drugged up at this point he can't? Patient advocacy isn't especially helpful either, I've dealt with them before. I've also tried hospital social workers and I'm not sure they're helpful, they mainly assess people to make sure they're able to get home from the hospital/able to function at home. I'm really hoping his new care team overhauls his care and changes things. Otherwise, can local SCI associations assist him? At this point he'd almost need a family member but that's not an option. What do people do in this situation?


  • #2
    the way it sounds is no one is advocating for him and the way it's going they will kill him eventually! is there any way his family can travel to him? or at least call on the phone to speak to the doctor's if not i would try yourself to advocate for him since it seems he can't himself have him tell them that you can be involved in his care and you yourself ask these questions. first off he needs to be stabilized and then transferred out of there. is their a patient relations dept at the hospital he is at? he also needs to get with a physician that knows about SCI and rehab.
    T6 Incomplete due to a Spinal cord infarction July 2009


    • #3
      What city and Hospital is he in? Please send me that information I will do a google search and see if i can help. There might be a chance there's a Independent Living center near by him. Almost all of these independent living centers. Have Peer advocates and peer mentors who go to rehabs to assist with this. I am a T-10 para and one of my first jobs was Early Intervention specialist at ABIL In phoenix Az. Arizon Bridge to Independent Living. I would go into rehabs to assist newly injured individuals re integrate back into society. After acquiring a new disability. There are resources here in Arizona. We have the Arizona center for disability law that sometimes even gets involved. Anyone with a disability automatically qualifies for free attorney services. I look forward to your reply and will definitely search to see. If I can find a local peer mentor advocate for him. Good luck


      • #4
        I agree with the others that the best thing you can do is to try to get him out of that place and into a facility with more expertise in spinal cord injuries. I am assuming that you are in Canada and unfortunately I don't know much about how the Canadian health care system works. One place to start might be just to Google SCI centers in Canada see which one is the closest. Contact them directly to see if you can find out what might be necessary to move your friend to that facility. Bless you for taking on this role as advocate.

        "Blessed are the pessimists, for they hath made backups." Exasperated 20:12


        • #5
          Not sure if there would be any assistance from the Canadian Paraplegic Association (now called "Spinal Cord Injury Canada") but it would a good idea to give them a call to see if they can provide anything:

          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
            Hey all,

            Apologies for the late update. I appreciate all the comments and you were all right. My friend is doing a LOT better. Turns out he had two infected abscesses near the wound and spine and that's why the infection kept coming back. We'd both been saying there was something way off because he had so bad spasms but docs wouldn't listen. Initially they thought he was using drugs and that's what was causing the repeated infections for months... but he kept testing negative for drugs and I know he wasn't using. Finally they brought in another doc who did a few tests (WBC scan, kept going to the sore area) and sure enough they found the abscesses. He since got them drained and got a wound vac (they're in limited supply at the hospital, not everyone can get them and provincial disability is a gong-show trying to get them to cover it) and for the first time in a long time he's healing quicker. Looks like he may be out by Christmas after 2 years in the hospital.

            He's in touch with the Canadian Spinal Cord Injury Association, looking at doing some schooling and just generally trying to stay sane after 2 years in that place. I'm there myself a few times a week so I visit when I can. Though he's learned so much on his own, hopefully he can do rehab when he gets out as they can't take him on as long as he's got the sore, and unfortunately the rehab centre here is the only one for a large region. There's no specialized centre that takes SCI patients, especially with sores (you're just taking up limited beds while not actively doing rehab apparently). Unless you go to Toronto 6 hours away but I doubt he'd make the trip and have even less social support there. Another option would be to be transferred to a different floor, there's a vascular floor, where it's mostly amputees that come from all over the province for care. But I've been on that floor and their staff is fantastic and super knowledgeable of everything pressure sore and mobility-related. He's not too motivated on that option but it's always there if ever. And he's called me for a few things so he's getting less shy.

            His main concern now is that he needs help getting into bed because of violent spasms when he tries to transfer. For example, for a while he didn't have a leg strap on his chair because the spasms would just throw him forward as his legs hit the straps, at least without the straps the legs would go but not the upper body as much. I guess he can cross that bridge when he almost gets to go home? But as the sore has been healing, spasms have been better. Here's hoping. On a lot less nerve pain meds too so he's back to his old self. I guess his current doc had tried Botox in his lower back at some point and it didn't help - I'm not sure what the rationale there was? Either way it's progress! At the very worst, is a lift an option? There's got to be a better solution here for bed transfers no?

            All around it's progress. Thank you all for your advice


            • #7
              You have been a saint and deserve recognition for the advocacy and support you have given this person. I am glad to hear that he is doing better and seems to be heading in the right direction. He is lucky to have you.

              That being said, a lift may be an option. If the staff is receptive to learning how to do it and the person being transferred is able to direct, it should work. I would not be in too much of a rush to use it - as his wound gets better, so should his spasms to a point. On the other hand, he may be doing damage to the wound with transferring back to bed. I would make the suggestion to a PT and see if they agree. Seems like the best bet at this point.

              Even though Toronto is 6 hours away (and there is a ton to be said for support), your friend may want to consider going there for rehab. It is a great center and they really know what they are doing in caring for individuals with a spinal cord injury. That is truly what he needs at this point. The other option of the "amputee" floor may be good in the short haul. Although there is a big difference in the care needs and the staff may not know spinal cord injury it sounds like they do know skin care and that is a top priority.

              Thanks for all you have done.

              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.