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Thread: Hospital Stays for Quads are a nightmare!

  1. #1
    Senior Member Norm's Avatar
    Join Date
    Jul 2001
    Media, PA

    Exclamation Hospital Stays for Quads are a nightmare!

    The staff at these hospitals have no clue how to help quads. Don't they get any training on SCI. If I didn't tell them I need my Foley cleaned & a suppository every other day who knows what would have happened. I brought my Tranferboard & they had no clue how to use it. I think the Hospitals with rehab floors should let quads stay on those floors so the staff has a working knowledge of SCI. I dread my next trip to the Hosp. Why don't they train for these situations. I wonder how many quads have died because they weren't awake to explain to the staff how to take care of them.
    "Some people say that, the longer you go the better it gets the more you get used to it, I'm actually finding the opposite is true."

    -Christopher Reeve on his Paralysis

  2. #2
    i know exactly what ya mean. i was having problems a few years back an had to go to the hosp. 3 or 4 times, 3 to 4 days at a time. i absolutely hated it an probly made things worse on myself because i put off going in because i knew what a nightmare it was goin to be. they knew absolutely nothing about sci. i was same as you....suppository everyday, sliding board.

    i dread an hate to see the day i ever have to go back......

  3. #3
    You're right, they don't have a clue. I have my regular PCA's come in and do my care (catheter, bowel, etc.) and the hospital staff doesn't mind a bit, they'd just as soon not bother with me.

  4. #4
    It's really quite bad.
    Get involved in politics as if your life depended on it, because it does. -- Justin Dart

    I shall not tolerate ignorance or hate speech on this site.

  5. #5
    I've been really lucky, but remember once I had to go in and I had to have my neighbor bring me suppositories because the hospital staff COULD NOT UNDERSTAND what it was I was asking for. The phrase "neurogenic bowel" meant nothing, God forbid you have to explain autonomic dysreflexia.

    It really was terrifying. Since then, all procedures have been outpatient, thank God. It still amazes me, with my incomplete injury, they can't understand I might need help getting on a table or whatever. Ummm hello, I did ride a wheelchair in...

  6. #6
    this sounds all too familiar. a cpl. of years ago when i had tendon transfer surgery, i had to stay overnight just for observation. the hospital is adjacent and connected to the Shepherd Spinal Center. they do a lot of spinal surgeries there, as mine was done there, but in this stay i think only 1 nurse out of 3 nurses and 3 techs that checked on me knew that i was SCI. my dad was thoroughly disappointed as was i. it started when i got to my room and the tech asked me to hop out of my chair and into the bed.. not many quads are hopping into anything..

    Life isn't like a bowl of cherries or peaches. It's more like a jar of jalapenos--What you do today might burn your ass tomorrow.

    If you ain't laughing, you ain't living, baby. Carlos Mencia

  7. #7
    Senior Member Norm's Avatar
    Join Date
    Jul 2001
    Media, PA


    In 1989, I asked to be taken to Thomas Jefferson University Hosp in Philly which is one of those 13 designated catastrophic SCI centers, for an infected elbow. Yet they didn't put me on the 3rd floor rehab with the other post surgery & now stable injured SCI patients. (The 9 floor is where you go when your first injured.) They put me on a regular floor & they had no idea what to do. They need to do something about this. I do understand that maybe there were no beds but I never once heard them say lets try to put him on the 3rd floor. When I was first injured I stayed at Magee Rehab Hosp in Philly which is where TJU sends everybody after their stable enough for therapy. And I remember seeing a bunch of Para's on prone carts with skin breakdown who were hurt many years ago. They were allowed to stay at Magee Rehab Hosp until their skin healed. That should be the procedure for any Quad that needs long or short term hosp like care. Had I known what I know now I would have stayed at the local Hosp rather than get shipped 50 mins further to Philly. And I love Magee & Jeff because they are great when your first hurt. But they need to get the right personal to handle Quads on the other floors. And that goes for every Hosp!
    "Some people say that, the longer you go the better it gets the more you get used to it, I'm actually finding the opposite is true."

    -Christopher Reeve on his Paralysis

  8. #8
    Senior Member Max's Avatar
    Join Date
    Jul 2001
    Montreal,Province of Quebec, CANADA


    I hate going to Hospitals Get out more infected than I was

  9. #9
    Quote Originally Posted by betheny
    It still amazes me, with my incomplete injury, they can't understand I might need help getting on a table or whatever. Ummm hello, I did ride a wheelchair in...
    lol It's funny and sad when otherwise smart people miss the train.

  10. #10
    Yes, unfortunately the only thing you can do is to be a strong, assertive advocate for your needs, or have a family member who can do this. Some people even arrange for their PCA to come to the hospital to provide some of this care. SCI is such a small specialty that most health care professionals have little or no training in it, or what they do know is totally outdated. I shudder to think what I was "taught" about SCI in my basic nursing program.

    They won't allow you to be on the rehab unit (and even they may not know much about SCI) because of Medicare regulations, which are very strict, about the types of patients that can be admitted to rehab units. If they violate these rules, even for non-Medicare patients, they risk loosing their Medicare license as an acute rehab, and if that happens, they would have to close the unit. You can sometimes ask that their staff (esp. a clinical nurse specialist if they have one) consult with the nurses on your unit to help them to develop an appropriate nursing care plan.

    I would encourage you all to have a list of orders that your physician would need to write if you were hospitalized. Keep this list with you, and give a copy to family members or close friends. When hospitalized, insist that the physician write these orders. Don't assume anything will be done by routine/protocol/standard of care. This should include (for example):
    • Turn patient every two hours, even while asleep.
    • Place on a low air loss mattress.
    • Inspect skin BID; document and report any skin changes to physician immediately.
    • Physical therapy to assist in getting patient out of bed (with the frequency, and how soon this needs to occur after surgery or after vital signs are stabilized), OR Use mobile lift for all transfers from bed to wheelchair or wheelchair to gurney.
    • Patient to use only his own wheelchair when OOB (do not use geri-chair or any chair without the patient's own wheelchair cushion).
    • Bowel care daily (or qod as per your routine) using XXX suppository at XXX time. Follow with digital stimulation on the commode until full evacuation is achieved OR in bed on a chux (no bedpan) if bedrest is required.
    • Straight catheterize every 4 hours (or whatever your routine is).
    • If blood pressure is elevated over 40 mm. Hg. above baseline immediately do the following: 1) raise HOB 2) release abdominal binder, remove TED hose, remove shoes 3) check BP every 2-3 minutes, 4) drain bladder completely (with specifics for your bladder management). If systolic BP exceeds 150 mm. Hg., call physician stat (or an order to give Nifedipine or nitropaste, as appropriate).
    • A list of your meds, including the dosages and times they need to be given.
    If you have a need for special meds (such as Magic Bullet Suppositories) or supplies (such as touchless cath kits or a special external condom catheter) bring these with you. Most hospitals will not have them in stock.

    I find it sad to have to do this, and disappointing as a nurse that other nurses cannot take the initiative to find out what is needed and advocate for their patients, but this is what I have to do myself when my mother (who has MS) is hospitalized. I also meet daily with the charge nurse or head nurse on the unit (this is your right) to get any issues under control immediately. If they have a clinicial nurse specialist, this person should become your best friend during your hospitalization.

    I also encourage you to write a letter...either praise or criticism....following your hospital stay. Send copies to the hosptial director, the director of nurses, and to the patient advocate. Always make suggestions for improvement, and if possible, offer resources, help in organizing staff education, etc.

    Last edited by SCI-Nurse; 10-04-2006 at 02:29 PM.

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