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Week of hell rant...

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    Week of hell rant...

    So on May 19, my parents went out for dinner and brought me back prime rib, (rare) baked potato and rice. Later that evening I started getting sick and thought that it might have been the rare prime rib. Throughout the night I threw up what constituted my dinner and felt a little better, but by morning I began throwing up bile. I have, since November 2016 had six or seven ileus', so I assumed that's what I was experiencing again. I don't know how much bile a person has in store but combined with the water I drink I think I vomited about 2 quarts of it. As much as I hated to do so I called for an ambulance and went to the hospital.

    Because of how much my stomach was distended and how much vomitus that I told them I had, they got my x-ray and CT done fairly quickly. That's when they came in and told me I was requiring surgery they weren't sure exactly what was causing the blockage but was sure that it required surgery. This would be the second time I had been cut open. I was supposed to get my catheter changed that day at home but my nurse usually comes later in the day, so this meant that my catheter bag was two weeks old. Now anyone with any common sense and even the slightest amount of knowledge of bacteria would know that you do not get a sample of urine out of a person's catheter bag, especially when it was two weeks old, but the doctor ordered the nurse to do so. I tried to get him to at least use the portal but I had vomited myself into dehydration and my bladder was empty. I knew this would come up showing a bladder infection because every time I go to that hospital the same thing happens. The last time I was there, they put me on three different powerful antibiotics for three days until they realized that I didn't actually have a UTI and they sent me home.

    Anyway, they come in and put a central line into my neck, then wheel me to the OR. Fortunately for me they planned to put the NG tube in after I was sedated. It turns out that the mesentery tissue that holds the large intestines together had a small hole underneath the transverse colon. A portion of the small intestines pushed through that hole and got its blood supply cut off. Luckily when they pulled it back out, it turned pink again which meant they would not have to cut that portion out.

    I woke up in recovery, still intubated and confused as hell. Every time before when I had surgery they always removed the tube from my throat as I came to. I thought I was choking because I could not actively breathe in and breathe out. It wasn't until a minute or so had passed that I realized what was going on. I heard people talking about me as though I wasn't awake (and saying things about me that I don't want to discuss) and none of them had the decency to come over and tell me that I was still intubated. I don't recall how long I was in recovery but when I finally got to ICU, I had the unenjoyable experience of playing quadriplegic charades, trying to explain to them that I needed my baclofen, as what I took the night before was likely not in my system due to vomiting and I had not taken any since. My sister works at the hospital as a social worker for women and children and because of covid, had my caseworker get her in to see me. She was able to help them understand what I was saying and got everything in order.

    After my sister left, the nurse that was trying to understand me before my sister came in went on a rant with another nurse about how pissed off she was that my sister had used my caseworker to get in to see me, as though I couldn't hear her. I would've yelled at her if not for having been intubated. They finally took the tube out before they put into a regular room. I asked if they could get a "dolphin bed" as they normally do but never did the week that I was there.

    Because I was laying on a harder mattress and had just had surgery my blood pressure was higher than normal was higher than normal. I tried explaining to everyone that it was caused by autonomic dysreflexia and even explained what that was (several times) to people who should have already known. The next day they were trying to get my bowels moving so they used a suppository plus other types of medication. I tried explaining to them that the stool would not come out of me on its own and would require digital extraction. One nurse finally decided to try and do so but got no results and seem to get upset by the fact. I only have three people at home who know how to do a bowel program but because of Covid restrictions they only allowed one person to visit each day. They kept giving me laxatives and such to get my bowels to move and after another day I could tell that my bowels had moved down but I could not get a nurse the digital extraction. This caused by blood pressure to go up again and I tried telling them what was going on as I did the doctors who visited each morning and explain to them that my bowels will not move all the way out on their own unless it turned to diarrhea. My mother works but came in after work one evening and did a bowel program because no one else in the hospital would do so. My caregiver came by two days later and did a bowel program which pretty much emptied out every bit of stool left inside of me. The next day they had me eating clear liquids and Jell-O and the day after regular food. This of course led to me requiring another bowel program but it was late in the evening and visiting hours were closed. My blood pressure went up quite high due to my rectal vault being filled with stool. The nurse's assistant who had just taken my blood pressure was worried as was I and I told him what was wrong and what needed to be done to get my blood pressure to go down. He went and told my nurse and instead of asking a doctor for permission to do a digital extraction they gave me medication instead. The next morning one of the surgical team members came in and I told him that if I was not allowed to go home that day they would have to make special permission to allow more than one of my family members to visit because I was going to need a bowel program. I told him about what happened the night before and he told me that my nurse had called him but did not mention my bowels and only asked permission to give me medication to lower my blood pressure. He seemed pretty upset that the nurse had not mentioned it to him. Fortunately, I did come home that day and got a bowel program done immediately after getting in bed.

    The entire week I was in the hospital I was so ready to just die. I was treated like a nonperson. No one listened to what I told them or at least seemed to give a shit about why my blood pressure was so high and did not care to learn about dealing with a spinal cord injured person. Combined with the almost zero amount of sleep that I got my psychological state was lower than it has been in years. All this happened just as I was about to call my gastrointestinal surgeon to schedule getting a colostomy. I was told to wait about two months before I rescheduled my colostomy surgery so that my intestines would have time to get back to normal and allow my incision to heal. Unfortunately I had a couple staples that pulled loose and I am having to wait until it closes up before I do so. When I was young I didn't quite understand the quote, "life is what happens to you while you're making other plans" but now... Lord do I ever.

    I've been meaning to post this for a while but I'm just now getting over the psychological hell of that week. End rant.

    #2
    So sorry this happened to you. I would recommend filing a formal complaint with the patient advocate's office at this hospital, sending a report to both the Joint Commission and your state's agency for oversight of healthcare facilities for investigation, and contacting the risk management dept. of the hospital as well. For the latter, you can mention that you may need to pursue legal action for the staff putting your life at risk by not managing your AD (which includes treating the cause; your bowel impaction) and unprofessional behavior of the nursing staff. You may want to also go to the press if you don't get satisfaction from the hospital on your complaints.

    (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


      #3
      Originally posted by SCI-Nurse View Post
      So sorry this happened to you. I would recommend filing a formal complaint with the patient advocate's office at this hospital, sending a report to both the Joint Commission and your state's agency for oversight of healthcare facilities for investigation, and contacting the risk management dept. of the hospital as well. For the latter, you can mention that you may need to pursue legal action for the staff putting your life at risk by not managing your AD (which includes treating the cause; your bowel impaction) and unprofessional behavior of the nursing staff. You may want to also go to the press if you don't get satisfaction from the hospital on your complaints.

      (KLD)
      Do hospitals anywhere else in civilized sections of this country disimpact SCI's without doctors orders? I have only ever had a nurse do one, maybe 2-4 times in all the years that I have gone to my local hospital. If I needed one, my family or caregiver would come to the hospital and do it, but with Covid restrictions it was almost impossible.

      Comment


      • SCI-Nurse
        SCI-Nurse commented
        Editing a comment
        Disimpaction is not the same as digital stimulation or manual removal of stool. The latter is NOT prohibited from nursing practice in any state I know of, in spite of what a lot a lot of nurses want to claim because they don't want to do it. It may be restricted to RN interventions though. If you are refused normal SCI bowel care, I would recommend going through the head nurse of the unit or even all the way to the CNO (chief nursing officer) and recommend that they review their policies and get their staff up to speed on this. You can certainly reference the clinical practice guidelines on bowel management from the Consortium for Spinal Cord Medicine (available to download on the www.pva.org website). (KLD)

      #4
      Originally posted by SCI-Nurse View Post
      So sorry this happened to you. I would recommend filing a formal complaint with the patient advocate's office at this hospital, sending a report to both the Joint Commission and your state's agency for oversight of healthcare facilities for investigation, and contacting the risk management dept. of the hospital as well. For the latter, you can mention that you may need to pursue legal action for the staff putting your life at risk by not managing your AD (which includes treating the cause; your bowel impaction) and unprofessional behavior of the nursing staff. You may want to also go to the press if you don't get satisfaction from the hospital on your complaints.

      (KLD)
      Absolutely, as usual KLD is spot on! You were treated disgracefully, on so many levels.
      Last edited by Bonnette; 17 Jul 2021, 11:39 AM. Reason: missing letter
      MS with cervical and thoracic cord lesions

      Comment


        #5
        Scott,

        Add my name to the list of us who are outraged on your behalf. Over the last13 years I've read dozens of stories from SCId people who get mistreated at hospitals. When I was in rehab there was one bright, but timid resident who grew concerned about my inability to have BMs, so he went to the literature. He recommended to the nursing staff that they do digital stimulation. They then proceeded to make him a laughing stock, belittling him to his face and calling him the baby doctor behind his back. Not as in a pediatrician but as in a childish doctor, all because he did not properly respect the nurses' tyranny.


        I thank God you have family members. who will intercede to speak for you when the "responsible" people do not listen to you.

        😘
        Last edited by Tetracyclone; 17 Jul 2021, 10:23 PM.

        Comment


          #6
          What a nightmare. This is why when it's my time to go, I hope that I go quick.

          Comment


            #7
            This is one of those stories that make heathcare workers cringe. There is no place in any facility for this type of unprofessional behavior. I concur with KLD that you need to file a complaint and do it sooner versus later. If you can, try to stick to the facts and not let your emotions override you - I know that is hard.
            I am also so sorry that you went through this.
            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


              #8
              I have called the patient advocate's office twice and left a message but have not heard back. I'll call again tomorrow but if I don't hear back I guess I will contact someone in the state that regulates the hospitals??

              Comment


                #9
                I think you'll get the best results by taking steps as outlined by KLD in Post #2. Everything will need to be in writing, with copies sent to the appropriate hospital departments, JCHA and state oversight agencies. I doubt if phone calls will go very far. A written document, with "cc" to official agencies at the bottom, will get noticed. What happened to you is appalling, so (seconding what KLD says), don't rule out going to the press if you don't see action on your complaints within a reasonable amount of time. Grrrrrr.

                Edited to add: The text of your first post in this thread could serve as the main body of your letters.
                Last edited by Bonnette; 30 Jul 2021, 10:32 AM.
                MS with cervical and thoracic cord lesions

                Comment

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