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Thread: Looking for inspiration

  1. #11
    Yes, the bowel program is a mystery to them. We were lucky there was a room with a ceiling lift when Dave in hospital last summer. I had to bring our own shower chair so he could even have a shower once an aide was brave enough to come in and do it. I brought up the manual chair so I could at least get him out of his room when he wa sout of ICU. We asked the right person (happened to be a neighbor of my mom's that stopped in to say hi-he fixes equip) for a sip-n-puff call light so Dave could at least call for help. They had one all along, but no one ever had heard of or seen one much less knew what they were for.
    I am at my wits end today to be honest. We started a waiver program in Jan which has been a life saver. Now the old financial worker retired and turns out she had miscalculated our spend down so we owe money.
    Good Grief-I am on a rant. My heart is pounding over some other things right now.
    My poor sweetheart's arm just feel off of his chair as he is tiled back sleeping. He never complains.

  2. #12
    And I think that most in healthcare also do not "get" or consider the caregiver angle of this. And I'm an RN!

    A few years ago Jim was dealing with lymphedema in his lower legs along with open wounds. He saw a lymphedema specialist who set him up with elaborate wraps to put on and take off everyday. That was fine. I understood the need and we just adjusted our AM schedule to accomodate. Then Jim came home and said that the therapist wanted me to attend his next appointment to learn the massage technique that goes along with the wraps. I was in the middle setting up and managing an extensive orientation for about 40 nurses for a new TCU that we were about to open. I arranged to have someone cover my afternoon so that I could go with him. She was very sweet, but made it this big thing with "you can put on some soft music and soften the lights". After teaching me this massage which would add 20 minutes to an already long wound procedure, she commented that she wasn't sure if Jim's type of lymphedema would respond to the massage but it was still nice to do. I almost jumped across the table to choke her -- and I'm a really nice person.

  3. #13
    Needless to say, we skipped the daily massage! I vented to Jim about the cluelessness of some in healthcare as we were driving home. To give you an idea of my wonderful husbands sense of humor, the next morning as I was sitting down on the bed to get started with the leg wraps, he asked "Aren't you going to put on some soft music?"

  4. #14
    I do have to say that last summer when Dave was in the hospital for 2 mo with pneumonia the nurses and RTs were our saints. Once they realized our determination, what I had already learned in rehab and that I would stand up to the parade of doctors they were really on on our side. They were as frustrated as we were with a lack of plan and the limbo he was in. We decided the best thing was to keep the trachea.
    The nurses started to let me suction and the head RT called Craig to find out what vent settings they would recommend if we tried using it at night only. We had a new doc each week. One would want to wean, one saw no hope in that etc. One moron tried to explain to me what paralysis was. When the RTs were convinced I could change the trach on a dummy etc they made me a "cheat sheet." There was one doc who was willing to go along with it all. I had started requesting the same group of seasoned nurses that were familiar with vents. (we had one bad experience with a new nurse panicking, but I am sure it was something she learned from and will never forget) They made a discharge plan that the doc just signed. On the last day they agreed to take out his G-tube. One of the docs said there was no way someone on a trachea would ever be able to eat! We felt like we were escaping a prison. My sister was at the door with the van ramp door down,I was pushing Dave in his manual and my other sister that is an old ICU nurse (part of the reason they let us go is that she stayed a few days) was pushing the vent. We kept waiting for someone to stop us!
    The nurses had a little pizza party for us. When we left I could tell the nurses and RT's were worried and happy for us at the same time, like when you put a baby bird you have nursed along back in the wild.
    That was last Au and we have done as well as possible.
    Thanks for listening.

  5. #15

    Checking up on Don

    Hi Don's Wife,
    I was just checking back into some threads I have followed and realized we haven't heard from you. How is Don doing?

    Hope all is well.

  6. #16
    Hi ginl, I'm mostly a "lurker", but I catch up on news weekly. Don's doing better. After re-reading my first posting in July, I realize how quickly everything goes. They're treating Don's ITP with a new med, once a week shot, seems to work most weeks. He started swelling up again a couple of weeks ago, so he was sent to his heart doc, they did echo and chem stress test and nothing has changed since last year so YEAH! Doc added a couple of meds and they seem to be helping. Hemo doc is going to start iron IV treatments this week for four weeks to help treat his iron anemia. He also gets in to see the seating clinic at Madonna Rehab to see if a new cushion will help with his pressure sores and his doc at Madonna also is having the wheelchair evaluation group see if he would benefit from a different chair and seating, so all in all we're busy but things are going good. How are things going with you?

  7. #17
    Dons wife -
    I missed this thread before. My wife's journey to SCI started (about 8 years ago) with aplastic anemia - her platelets were almost nonexistent & she was a mass of bruises. The treatment that worked was antithymocyte globulin, delivered IV over a couple of days. That apparently worked, and her platelet count rose very slowly to be only somewhat below normal after a couple of years, and the other month it was above 140 for the first time. Unfortunately, she got an infection from the PICC line that led to her SCI at T-5 a couple of years later, but that's a different story.
    Good luck to both of you.
    - Richard

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