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    Question for independent c4 and c5's

    Hi All-

    We are the parents of a twelve-year old c5 (Aug2009) and have a question about turning at night. Right now we are advised to turn our daughter every two/three hours. To the independent adults....how do you achieve this each night? Mattress? PCA? You do it yourself with an alarm or whenever you feel like it? Right now we have hospital bed with alternating pressure pad.

    She just came home after almost three months and we are finding out all it really takes to care for her without the support of the hospital/rehab staff. We'll be looking to the collective wisdom here until we can get with a support group or something with other SCI parents. (Ha, also looking to call some PCA agencies soon for interviews.)

    Thanks-

    #2
    Is her injury complete? Any function or sensation below C5?

    Many here do not turn that frequently.

    My body wakes me up once a night and I shift my position. Would she be able to do this? Physically, I mean. I am C7.

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      #3
      Injury complete but occasionally she can feel DigStem, wrists are getting strong and weirdly enough she is able to move toes on one foot on command BUT not always...she does it a few times at our command and then she can't.

      I put the question up because we are trying to make sure we all get enough sleep. The last couple nights we have been turning her every three hours. She sleeps about nine hours, ha, and we could too! I know the turning is great for skin breaks but wondering if there is a better "real world" solution?

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        #4
        If she cannot turn herself, she really needs to either be manually turned at least every 3 hours or have a turning bed/mattress. Turning is not only important for prevention of pressure ulcers, but also for proper drainage of pulmonary secretions. The only exception to this is if she can learn to sleep prone (on her stomach) with proper bridging to prevent bony area pressure. If she can do this, she can go all night without being turned.

        There are turning mattresses and beds. You should see if her insurance will cover them. Some are also low air loss, while others are foam or foam/air (non-LAL) combinations. Prices range from $4000-8000.

        Frankly alternating pressure overlays are not worth much for prevention of skin breakdown and have no value at all in preventing orthostatic pneumonia.

        (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.

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          #5
          Originally posted by Domosoyo View Post
          Injury complete but occasionally she can feel DigStem, wrists are getting strong and weirdly enough she is able to move toes on one foot on command BUT not always...she does it a few times at our command and then she can't.
          If her wrists are strong, she should be able to figure out how to turn herself eventually. Good wrists can help her become more independent as well. In the meantime, lying prone with proper bridging, like KLD said, could help you all get a good night's sleep.

          The fact that she has wrist function indicates she's functioning right now at a C-6 level at least. This and the occasional tow wiggle and sensation with digital stim is encouraging, and it might indicate that she may actually be incomplete and might gain more return of function and sensation. Time will tell, but these can be good signs.
          Last edited by Scorpion; 9 Nov 2009, 2:47 AM.

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            #6
            I find the toe wiggle to be a great sign. She can't do it repeatedly due to muscle exhaustion. Been there.

            Does she have any bicep function at all? That was how I learned to roll, hooking my arm thru a bedrail and pulling w/ a bicep.

            The wrist funxn is great...she may be able to do a lot via tenodesis, eventually. It all takes SO LONNNGGGGG.

            Good luck to you all.
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              #7
              Originally posted by Domosoyo View Post
              Hi All-

              We are the parents of a twelve-year old c5 (Aug2009) and have a question about turning at night. Right now we are advised to turn our daughter every two/three hours. To the independent adults....how do you achieve this each night? Mattress? PCA? You do it yourself with an alarm or whenever you feel like it? Right now we have hospital bed with alternating pressure pad.

              She just came home after almost three months and we are finding out all it really takes to care for her without the support of the hospital/rehab staff. We'll be looking to the collective wisdom here until we can get with a support group or something with other SCI parents. (Ha, also looking to call some PCA agencies soon for interviews.) Thanks-
              My C-6 son uses a Tempur-Pedic memory foam mattress that was broken in by me jumping up an down all over the new mattress. He has been using it now for 2 years. He can now turn himself without problems. It's also firm enough for him to self-transfer. 2 years ago, he could not. So, we used a wedge an propped it under his back on one side. The next night, the wedge was put under the other side of the back. Third night, he slept on his back. Then started the procedure over again. Partially laying on the side exposes the side-down ankle to a pressure sore which needs to be protected by putting a thin pillow under the calf to raise the ankle an inch or two off the mattress.

              He slept in these positions for several years till he was able to turn himself. We did not rotate him every few hours. The memory foam mattress kept him from getting pressure sores as it distributes the weight well.

              Another option is an air mattress such as Select Comfort which we also tried. You can also get a air mattress topper that has sections and an air pump which constantly change the pressure up and down. It does make noise and will require a doctor's prescription. The special mattresses are a medical tax deduction, but are a real pain (if not impossibility) to get from an insurance company.

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                #8
                Sleeping prone is what worked for my family when they were my caregivers. I'm a c5/6 incomplete and because I have feeling I didn't like sleeping on my back. I feel much more comfortable and sleep so soundly on my stomach. The nurse speaks of bridging which is probably a good idea, I don't use bridging cuz I'm not bony but I think sleeping on one's stomach is the way to go.
                A dolla makes me holla, honey boo boo! - borrowed from Honey boo boo child

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                  #9
                  Every case is different but I have always used regular foam mattresses and I am now using a latex one and I have never turned at night, not that I am not able to, I am independent for transfers and all. 25 years post, never had a pressure sore or any pulmonary problems (fingers crossed I guess). Most of my quad friends of the same level don't turn either. I guess it's all a matter of individuality and careful trials and errors but I am an example among others for whom all that turning is not necessary with the proper mattress. Oh, by the way, I am a C4-5 functioning at C6.
                  Pharmacist, C4-5 injury but functional C6 (no triceps/flexors)

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                    #10
                    Wow, this is all so helpful. I'm sure we were not clued in on the turning mattress or the turning bed because insurance wouldn't cover it. That is irritating because I like to know what ALL my options are, not the filtered version. sigh.

                    We have already looked at the various turning beds and turning mattresses online. Sleeping prone seems to be a no brainer and pretty inexpensive. She doesn't get her neck collar off for a week or so though, so we will talk to OT/PT about the proper positioning etc for her to sleep prone.

                    Sleeping is just one of many hurdles we are facing right now with her back home. None of our home/bath modifications are done yet and we are winging it on all fronts. The commode is too big, we hate the sling for the Hoyer, we have no way of getting her bathed or showered, etc. (We layed her on the bed tonight and poured water into a tub on the floor to wash her hair.) Tomorrow we will look at a used commode/shower chair and try to get a new sling asap. Gotta solve this stuff. We are even thinking of going to the local fitness club JUST to use the private family shower rooms AND school offered their showers after school.

                    Her first day back at school is tomorrow. Wish us luck!

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                      #11
                      I don't turn at all during the night regardless of what position I sleep in. I'm C5 and prone is the only position I can't do. I've been injured for 2 1/2 years and so far no pressure sores.
                      __________________________________
                      C4/5 functioning on a C6 level, use of left hand, no triceps

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                        #12
                        I'm a c5-6, 32 yrs post-injury. I sleep all night, every night on my left side with a pillow between my legs and another folded in behind my back. NEVER had a problem. Beimg on my side I can roll forward and sometimes I reach behind and work the pillow out from behind my back so I am laying sort of flat but with my legs still bent, facing left with the pillow still intact.
                        Rick Goldstein
                        GO! Mobility Solutions
                        facebook.com/goes.anywhere

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                          #13
                          I'm C4, 9 years post. I use a regular mattress and am never turned every 2-3 hours. In reality, it is just not practical to do so. I sleep on my side with a body pillow behind me. Pillows to ensure my feet don't bug me at night. Turning frequently simply does not fit our lifestyle nor is it necessary for me.

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                            #14
                            I'm on a low air loss mattress right now and I never turned at night. There's just no one here to do it and I haven't figured out a way to do it myself. I do little bit of wiggling here and there the best I can but otherwise, I'm pretty flat on my back. Turning Freeney. It's time for me is pretty impractical anyways because I have a severely arthritic left hip what charts really bad to lay on in the right shoulder that gets really sore after about half an hour so laying on either side is really harsh on me for any more than half an hour or so.
                            C-5/6, 7-9-2000
                            Scottsdale, AZ

                            Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

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                              #15
                              im inc c4/5 func c6. i keep a rope hooked to the leg of my side of the bed just in case i get stuck on my back. i move alot at night. normally start on my bacjk then roll over to right side when i get uncomfortable, then back an forth all night back side back side. always a regular matress w/ 1in mem foam. 22 yrs post. never a sore
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                              John@bike-on.com
                              c4/5 inc funtioning c6. 28 yrs post.
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