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Thread: Sore healing but infections keeping up? Docs won't address bladder stones either...

  1. #1

    Sore healing but infections keeping up? Docs won't address bladder stones either...

    Hello, I posted a while ago about my friend with a SCI (high T, incomplete - unsure exact level) and you all had helpful advice. He's been admitted on an internal medicine floor for 2.5 years now (short break home last year) and never got a chance to do rehab because of the sore, they won't take him until it's healed. They found 2 infected abscesses near the wound and drained them a few months ago (but not after months of him complaining of pain and spasms and them assuming infection was due to drug use when he was clean as a whistle, finally they found them using white blood cell scan after drug tests came up repeatedly clean). For a few weeks he was assigned to some critical care team to figure out the problem so I had high hopes but he just got his old docs after the abscesses were taken care of. His spasticity got a bit better after that too. Good news is after the wound vac, pressure sore on coxxyx is healing nicely.

    Problem is as soon as he goes off IV antibiotics for a few days, infection returns and that's why he can't get discharged. Again these docs don't seem to know why. Sore is looking good but they plan is to have him on IV antibiotics for something like 3 months before they discharge him home for good. I don't exactly trust his doctors given past events. He won't entertain transfer to another hospital but I've been trying to convince him to ask for a 2nd opinion or other docs. Am I being overly worried here? How do you go about that when admitted? I'm almost wondering if there isn't still an abscess in there...or something else. I really question his docs. He was recently given a PICC line (thankfully) because after 2+ years, his arms are pretty done so that's another step forward. I can't imagine why it took so long since I get a PICC when I need more than a few days of IV anything.

    Then today one of his doctors apparently told him he had multiple bladder stones but since passed one already and "because he's lucky he shouldn't feel them being paralyzed" that it wouldn't matter and they'll just let things be (!?). He can feel some, and besides wouldn't they cause spasms and increased spasticity regardless of whether he could feel them or not? That's how it works for me anyway. Yikes. I asked him if he'd even been seen by urology, he says no, apparently it was suggested but never happened so I'm not sure how he was diagnosed with stones (other than passing a large one). Perhaps the stones will pass but to me,"he can't feel them" so lets do nothing about it sounds like a ridiculous argument. Especially when he's told me he feels it and it's painful (though not his main concern). He's already there, can't hurt to have him see urology just in case, especially since he's got infections all the time and they don't seem to pin down why.

    He manages using a condom cath without much issues, urine looks clear most of the time and he doesn't think it's a UTI. At one point they had suggested bladder botox but they didn't go through with it, possibly because he didn't want to rely on intermittent catheterization (IC). He's apparently supposed to do IC once a day to make sure his bladder is empty but every time he asks for a cath, it turns into a 2-hour ordeal to have to call the doctor for an order for a catheter. This makes no sense. I mean, urine looks clear but then again being on IV antibiotics all the time, I guess it would be (!). Again, he hasn't done rehab yet so I'm wondering if the way he manages things wasn't set up by internal medicine docs who have a general idea but not quite? So much of this sounds off. Maybe I'm being too critical here but seems like 6 months they keep adding another 6 months in the hospital with nothing but vague answers...

    He's not super motivated and has his sights set on hopefully going home. But he might take what I say into consideration so it's worth a shot? I'd need to know how he could request another doc take over his care? Or at least a 2nd opinion and/or seeing a urologist? I'm just not sure how that's done while admitted in the hospital already? If I don't have a specific plan for him, and push that he gets things done he won't bother. I'd ask my own docs that I trust but I suspect that's stepping over people's toes and unless they get a referral they wouldn't be able to do a thing. My last idea is contacting the local SCI organization here on his behalf, I know he used to be connected to someone there but again, I don't want to step on toes. You can also imagine that I've inadvertently insulted docs in the past by asking questions or requesting a second opinion (well it's one way to weed out docs and find one that's great to work with) but I don't want to give him advice that will cause him trouble with his current docs either especially since he's in there for the long haul. I suspect this is part of the issue, he doesn't want to make waves but somethings' gotta give in my opinion.

    Any advice? Thanks everyone!
    Last edited by twistties; 11-28-2017 at 02:15 AM.

  2. #2
    A good physician will not be insulted by a request for a second opinion. He should discuss this with his physician, and if he has one, his case manager as well. He should also formerly request a urologic consultation. Not sure how it works in Canada, but in the USA he could also go to the hospital's patient advocate for assistance with this is his primary physician refuses either a second opinion or an appropriate consult.

    When you say they drained abscesses, did they also diagnose osteomyelitis, and if so, what it further diagnosed by bone biopsy at the time of the abscess draining? This is the only way to really determine what bacteria is causing the infection. Has he ever had consultation from a physician who specializes in infectious diseases? We always included them in decisions about treatment of osteomyelitis. While most osteomyelitis can be treated with long courses of IV antibiotics, it doesn't always work, and some people live with chronic osteo. This often will prevent the wound from healing as well, and so living with a chronic open wound may need to be considered.

    Do you know if they are monitoring his labs for albumin, pre-albumin, CRP, WBCs, and sed rate? These will indicate if the antibiotic treatment is actually working. We tested for these weekly with our inpatients being treated for serious pressure ulcers.

    (KLD)
    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. #3
    Quote Originally Posted by SCI-Nurse View Post
    A good physician will not be insulted by a request for a second opinion. He should discuss this with his physician, and if he has one, his case manager as well. He should also formerly request a urologic consultation. Not sure how it works in Canada, but in the USA he could also go to the hospital's patient advocate for assistance with this is his primary physician refuses either a second opinion or an appropriate consult.
    Fair, I'll look into how that's done. In my experience patient advocacy isn't especially helpful but it's worth a try. It might be different when you're a long-term inpatient too.

    Quote Originally Posted by SCI-Nurse View Post
    When you say they drained abscesses, did they also diagnose osteomyelitis, and if so, what it further diagnosed by bone biopsy at the time of the abscess draining? This is the only way to really determine what bacteria is causing the infection. Has he ever had consultation from a physician who specializes in infectious diseases? We always included them in decisions about treatment of osteomyelitis. While most osteomyelitis can be treated with long courses of IV antibiotics, it doesn't always work, and some people live with chronic osteo. This often will prevent the wound from healing as well, and so living with a chronic open wound may need to be considered.

    Do you know if they are monitoring his labs for albumin, pre-albumin, CRP, WBCs, and sed rate? These will indicate if the antibiotic treatment is actually working. We tested for these weekly with our inpatients being treated for serious pressure ulcers.
    Good point. I have no idea if osteomyelitis was considered or diagnosed. I do know the abscesses were near his spine and word was that after they had drained them they were expecting infections to resolve. I'll inquire. And infectious diseases seem to be curiously missing from the picture of what he tells. I see them a few times a year with chronic infections, my docs don't hesitate so I guess I assumed they must have been called at some point. At this point I wouldn't be surprised if he's never seen ID but I'll ask, I had also assumed he'd seen urology and today I found out he hadn't. Wound is closing nicely for the first time in a long time but I'm wondering if it's not closing with something something deeper still infected (what happened last time).

    WBCs are being monitored I know that. Not sure about the rest. I'm not sure if the rest but I'll ask. I get blood work by the same people all the time and I can count only 4 separate times albumin was monitored in my case with chronic infections so I'll guess that it's not part of the standard lab work internal medicine orders, or if most departments do. That's not to say his lab work isn't different though.

    So lets say hypothetically living with an open wound or chronic osteomyelitis is the result, then someone in that position would also be on antibiotics and ill indefinitely? Or am I missing something, he definitely spikes a fever and gets really ill days after he goes off of antibiotics. If hypothetically that was the case, he's going to be stuck there a while...

    Now I have more questions than I did, but I will look into it and it's a start. Thank you KLD!

  4. #4
    Once you have had osteomyelitis, it never really goes away. It can go dormant or into remission but it kinda hangs out there. You are not always sick with it.

    I am not sure how Canadian medicine works, but we send people home on IV antibiotic once we are sure that we are treating the infection correctly. It may be something to look into.

    ckf
    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. #5
    Quote Originally Posted by SCI-Nurse View Post
    Once you have had osteomyelitis, it never really goes away. It can go dormant or into remission but it kinda hangs out there. You are not always sick with it.

    I am not sure how Canadian medicine works, but we send people home on IV antibiotic once we are sure that we are treating the infection correctly. It may be something to look into.

    ckf
    Thanks, I asked him and I guess they ruled out osteomyelitis (whew). Yeah that's how the Canadian system *usually* works here too, they send you home with IV antibiotics via homecare, at least that's been my experience. But since he hasn't done rehab AND has a past of drug abuse (even though he gets tested 3X/week and tests clean), they won't let him home alone with a PICC line, which they just pulled anyway due to concerns of infection. They never release me home without a PICC so I guess that's part of the problem for him...that and it took them 2 years to actually give him a PICC which they just pulled.

    Doesn't explain the returning infection but we'll take the wait and see approach I guess. He's been denied inpatient rehab once he gets out b/c of sore, but his team is fighting for inpatient rehab (which I wholeheartedly agree with, having done useless outpatient). Fingers crossed!

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