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Desperate for Advice for Young Quad in Massachusetts

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    Desperate for Advice for Young Quad in Massachusetts

    Hi everyone! This is my first post in the forum. I'm writing on behalf of a 33 year-old male quadriplegic, for whom I spent several years caring 24/7. Right now he resides in a nursing facility in Massachusetts, and we're in desperate need of help.

    Since moving him to the facility last March, we have encountered constant battles with his care needs, including (but absolutely not limited to): their lack of care led to a pressure sore that has kept him in bed for months; they took control of his SSDI without his knowledge or permission; and they have cut down the length of his nightly bowel regimen several times (it's now at 20 minutes), leading to him experiencing autonomic dysreflexia every night.

    The bowel regimen is primarily what I'm here to ask about. Massachusetts apparently has specific, restrictive policies regarding bowel regimens and the performance of digital stimulation, but all research and experience shows that what we've been asking for (digital stimulation every 10 minutes for 60-90 minutes) is what should be done to keep him healthy. So:

    How do other quadriplegics handle their bowel regimen in nursing facilities? What does and doesn't work? Are there alternatives we should explore for him?

    Thank you for your help!

    #2
    Contact Massachusetts Walks Again- http://www.massachusettswalksagain.org/

    Comment


      #3
      I would also encourage you to set up a time to speak with the director of the facility and the director of nursing. Go prepared with the Guidelines for Neurogenic Bowel care that are posted on line here. During the meeting, I would encourage you to not be accusatory - merely you are trying to inform them of how to prevent the possibility of this young man having a stroke. (that should get their attention). I am sure that you have tried this, but it may be worth another shot.... and I would also get the Massachusetts Walks Again organization involved.

      What about this young man's physician? They have to prescribe the bowel routine.... I would think that they would be concerned that their orders are not being followed.

      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.

      Comment


        #4
        I can't offer anything to this person from Canada but support and advice to keep fighting for his needs.
        Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

        T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

        Comment


          #5
          When I was at Boston University, they had an entire floor dedicated to spinal cord rehab. They were very professional. They offer many resources through their website including free legal consultation.

          http://www.bu.edu/nerscic/
          http://sci-law.net/index.htm

          Comment


            #6
            Thanks for the information on Boston. Good to know.

            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.

            Comment


              #7
              Have you been in touch with Mass Walks Again?

              If not, I can give you a contact.

              Comment


                #8
                I'm just writing to add my sympathy. I'm paraplegic, but had a constant battle getting any bowel help at all in all four nursing homes I've been in. Hospital rehab hadn't taught me digital stimulation. At one nursing home, a kind, experienced nurse gave me digital removal of feces on two occassions, and then the Director of Nursing told him he wasn't allowed to do it again. After that, I did it myself, but with no equipment and no training. It was a nightmare. I told the Administrator that I needed it and had done it myself. His response was to threaten to evict me! I lived in fear of being discovered by an aide while digitally removing my own feces. I was in nursing homes for a year and a half, and I fought for my life to get out and go home.
                Female, T9 incomplete

                Comment


                  #9
                  Many nursing homes (and even hospitals) prohibit licensed nurses (anyone other than a physician) from doing manual disimpaction of stool. This is an outdated rule, for several reasons. First of all, manual removal of stool in someone with a SCI is NOT removal of an impaction. It is simply the manual removal of stool from the rectal vault. Secondly, the supposed reason for this prohibition is that such a procedure would cause excessive vagal stimulation and cause heart problems. Since the vagus does NOT innervate the rectum or sigmoid colon, this is a bogus reason.

                  In ABs, it is possible for ascending sensory messages from the rectum of pain during disimpaction could trigger a vagal response once this information gets to the brain. Unless you are very incomplete, this does not occur in people with SCI, although it can of course trigger autonomic dysreflexia (this is NOT due to vagal stimulation but due to stimulation of sympathetic nerves).

                  Being constipation and NOT having bowel care done properly can also cause AD, so refusal of a nursing home to have a licensed nurse do bowel care including either manual removal or digital stimulation (depending on which you need to use) could actually be considered negligence if it led to AD episodes for you.

                  I have even had nursing homes who refused to do either manual removal or dig stim because they were convinced (in some weird Puritanical world) that the patient was requesting this for "sexual gratification"!!!

                  I would be very surprised if manual removal of stool by an RN or LVN/LPN is prohibited by state licensing bodies in any state in the USA. I would want to see this rule in writing if someone makes that claim. It is much more likely that this is due to a outdated administration and leadership, and not wanting to have to do something they consider "disgusting" for your care. Be sure you have a physician's order for such care, and also speak to your state nursing home ombudsman if you are getting no where with the director of nurses or administrator of the facility.

                  (KLD)
                  Last edited by SCI-Nurse; 5 Feb 2017, 11:25 PM.
                  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.

                  Comment


                    #10
                    Originally posted by VBoynton View Post
                    Hi everyone! This is my first post in the forum. I'm writing on behalf of a 33 year-old male quadriplegic, for whom I spent several years caring 24/7. Right now he resides in a nursing facility in Massachusetts, and we're in desperate need of help.

                    Since moving him to the facility last March, we have encountered constant battles with his care needs, including (but absolutely not limited to): their lack of care led to a pressure sore that has kept him in bed for months; they took control of his SSDI without his knowledge or permission; and they have cut down the length of his nightly bowel regimen several times (it's now at 20 minutes), leading to him experiencing autonomic dysreflexia every night.

                    The bowel regimen is primarily what I'm here to ask about. Massachusetts apparently has specific, restrictive policies regarding bowel regimens and the performance of digital stimulation, but all research and experience shows that what we've been asking for (digital stimulation every 10 minutes for 60-90 minutes) is what should be done to keep him healthy. So:

                    How do other quadriplegics handle their bowel regimen in nursing facilities? What does and doesn't work? Are there alternatives we should explore for him?

                    Thank you for your help!

                    why not get a colostomy its a lot better for a quad especially I call it independepence freedom

                    Comment


                      #11
                      Originally posted by SCI-Nurse View Post
                      I would also encourage you to set up a time to speak with the director of the facility and the director of nursing. Go prepared with the Guidelines for Neurogenic Bowel care that are posted on line here. During the meeting, I would encourage you to not be accusatory - merely you are trying to inform them of how to prevent the possibility of this young man having a stroke. (that should get their attention). I am sure that you have tried this, but it may be worth another shot.... and I would also get the Massachusetts Walks Again organization involved.

                      What about this young man's physician? They have to prescribe the bowel routine.... I would think that they would be concerned that their orders are not being followed.

                      ckf
                      Where Can i find the guidelines for neurogenic bowel care you referred to? i looked but couldnt find. thanks

                      Comment


                        #12
                        http://www.pva.org/publications/clin...ice-guidelines

                        You can find both the Autonomic Dysreflexia and Bowel Management clinical practice guidelines here.

                        (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.

                        Comment


                          #13
                          Originally posted by vjls View Post
                          why not get a colostomy its a lot better for a quad especially I call it independepence freedom
                          Sad that my life reached a point where I had no choice, but this solution changed my life ^^^
                          .
                          "If ya don't have it in the hips, ya better have it in the lips..." ~ Charlie - Villa Dulce

                          Comment


                            #14
                            Originally posted by vjls View Post
                            why not get a colostomy its a lot better for a quad especially I call it independepence freedom
                            After 24 years of doing bowel care I got a colostomy. One of the best decisions I've ever made. I wish I would have had it done 27 years ago.

                            Comment


                              #15
                              Where is he in Massachusetts? What facility?

                              Please contact me, I don't know that I can be of any help, but I will try.

                              I am a Massachusetts native and recent spinal cord injury survivor, currently still living in Massachusetts; and certainly still working on getting my care situation perfected as best as possible, because that is a never ending process. I have been in a great hospital in Massachusetts for postacute rehabilitation, as well as a rather subpar state hospital that I am in the process of filing many formal complaints against following my time there.
                              I have also ended up in a regular hospital for random medical reasons and have been told similar things about hospital staff and nurses' ability to do bowel program. I was having serious bowel impaction problems and was told nurses cannot do digital stimulation, and only medical doctors can do that with an MD. However, when I was at Spaulding rehabilitation Hospital for three months following my 1.5 month stay in the ICU after surgery, I had nurses doing bowel program and digital stimulation every single day at 5 AM for about an hour just to make sure that I was empty. Nurses who had many years experience were doing this to care for my serious medical condition as well as girls who had just graduated nursing school and had been trained on the spinal cord injury floor about what neurogenic bowel is, and how a bowel program/regime works for spinal cord injury patients and how necessary it is. This is something that is very important and is nothing to take lightly. This is something that the medical industry needs to understand. This needs to be fixed.
                              When I was transferred to a terrible state hospital after Spaulding, they were not doing bowel program correctly just like you say and I was having severe autonomic dysreflexia and was at extreme risk for stroke with blood pressure above 200 systolic every day for hours. I was stuck in bed for days with this problem, not getting up in my wheelchair and not taking my blood pressure medication that causes my blood pressure to rise to make up for it going low when I sit up straight in a wheelchair or stand for physical therapy. My blood pressure was already high enough, I did not needed to go any higher to make up for it going low because of orthostatic hypotension when I sit or stand upright.
                              The hospital staff told me they were going to bring in an outside neurologist to consult about my situation in one week's time. One week's time... Meanwhile I was stuck with 200+ systolic blood pressure for hours every day, with my head about to explode because of my blood pressure. The hospital staff documented that I was being belligerent when screaming in pain and telling the hospital staff that they needed to change what they were doing for my care to stop these symptoms. they told me that I needed to take a higher dose of muscle relaxers, and that that would stop my blood pressure from being so high, how they were caring for me had nothing to do with my symptoms, and that it was pure magic that I never had these symptoms when I was being cared for differently and the better hospital. Now magically it had nothing to do with the different regimen of care for my bowel program, but it was the fact that I needed to increase the dosages of my muscle relaxers and nerve pain medications. Despite the fact that both of these medications have nothing to do with altering blood pressure, as many doctors before and after my stay there have confirmed along with a simple reading of the desrciption of the medication. The hospital staff documented that I was not in compliance with my care and unable to take care of myself safely because I wanted to take the same medications at the same dosages from when I was at the better hospital for three months not long before this, and I did not want to take the much higher doses that they were telling me I should take. the hospital I was at before specialized in spinal core injury and specifically prescribed medications at those dosages; this very subpar state hospital that I am describing had barely any experience with spinal cord injury patients and did not have one single physiatrist on staff, I never even saw my doctor once who have been assigned to me, I only saw a nurse practitioner. they told me that they knew more about spinal cord injury and were better suited to treat me Van the hospital that special specialized In spinal cord injury, the number four acute rehab hospital in the country, number one on the East Coast outside of Atlanta and Chicago. They told me that I should not be able to live on my own and should stay there because I decided that I wanted to take the same medications at the same doses that were prescribed to me at the hospital that specializes in spinal cord injury. they documented that I should be disqualified for a number of social services programs that help patients like me live on their own outside of hospitals and nursing homes. This was all because of their malpractice.
                              The neurologist came and decided that he knew exactly what my problem was before he even saw me or asked a single question about my condition or symptoms. He had decided that I was on the wrong blood pressure medication and I should change it. He said this medication was causing my high blood pressure, despite the fact that it had not caused any problems over the past three months at the hospital that specializes in spinal bravery, despite the fact that I had not been taking his medication for the past several days because I was not getting out of bed because I was feeling so terrible with the symptoms, and because I knew that it would cause my blood pressure to rise and I only take it when I get in a wheelchair because that causes my blood pressure to get low.
                              He was wrong of course. And I had to resolve this issue all on my own. Again. This is life with a spinal cord injury dealing with the medical system. Spinal cord injury is a serious chronic medical condition that very few people understand and many people choose to ignore. Even doctors and nurses.
                              I left that place and went out on my own with barely any services in place because they disqualify me for them with what they have documented about me. They told those Massachusetts state social services programs and nurses that I would never be able to live on my own and had to live in that state hospital indefinitely because I would never be able to live on my own. But I knew that I had to leave that place as soon as possible, the only other spinal cord injury patient there had been there for 14 years and was so conditioned to living in a facility that he had no desire to leave and live a real life on his own and said he liked it there. After getting out and beginning to live on my own again with PCAs to help me throughout the day, living completely independently without those services I had been denied, I got reevaluated for those social services programs, they came out to meet me and decided that they were dead wrong to denying me those services based on what the state hospital workers had written about me, and realized this was a huge f*ck up that they were responsible for, and gave me all the services they could.

                              Please contact me, I don't know that I can be of any help, but I will try.

                              I saw this post a little while ago and after settling some other affairs I tracked it down and decided that I need to do something about this because I encountered the same issue many times. I will be working on resolving this with the state as soon as possible, this will be one of my projects.

                              In some ways caring for a patient with neurogenic bowel is an uncomfortable issue to talk about for many people, even including hospital staff. However they are professionals in the medical field and better be able to handle this otherwise they should choose another line of work. I have been dealing with the details of my condition for the past year and I have no inhibition about talking about these things and fighting on these issues and setting them right to make sure that the health of spinal cord injury patients is taking care of and not simply ignored by people who claim to be professional in the healthcare field, went to school for years to do this work and get paid well to do it.
                              Injured on July 8th 2017 at 28 years old.
                              Fractured C4 - C7, Incomplete.

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