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    Life outside of the hospital..

    i am scheduled to leave the rehab hospital in the middle of September..i am worried about what i need to have at home as soon as i leave the hospital..i understand that what im learning here at rehab is just the tip of the iceberg compared to what ill come across "in the world"..what are some of the basics i need to have at home as far as in the restroom and bedroom spaces??..i am cathing and have a morning bowel program..i am using a suppository to assist with my bowels..is there a specific brand or type of suppository that will work faster than 15-20 minutes??..im just filled with many questions and wonder about whats going to happen when i leave the hospital..any information will be appreciated..

    #2
    Your rehab team should have done a home evaluation to determine what equipment you need (such as grab bars in the bathroom, shower chair and/or commode, etc. etc.). Was this not done? Has anything been recommended and/or purchased?

    What type of suppository are you using right now? Some find that they do better with either the Magic Bullet (bisacodyl) or Enemeez mini-enema than they do with a generic bisacodyl, but they are both much more expensive. If your entire bowel care from start to finish takes less than 45 minutes, you are doing pretty well. Make the change NOW if you plan to change, not after you get home. Enough problems with accidents with the change in food and schedule already!

    Do you have a phone you can use in bed and wheelchair for emergencies? Do you have at least two wheelchair accessible exits from your home in case of an emergency? What is your level of injury? Do you have your wheelchair already?? What will you be doing for transportation? Are you independent in your care, or will you need help from family members? From paid attendants? Will you be living by yourself, or with others? Will you be doing the cooking? Can you access the kitchen fully?

    (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
      Hi, and welcome to CCC. I looked to try to find your level of injury, but you hadn't posted it. It would be helpful because otherwise you might get a lot of quad advice, which if you are a para would be sort of wasted, or if you are only asking about essential activities and someone tells you how to cook, for example. You are right in that the "real" learning comes after you leave the hospital. Some of it simply trial and error, but a lot of things can be learned on this site through other people sharing, so keep asking questions and maybe tell us a bit more about your level if you could.

      Comment


        #4
        Hey man, if you haven't tried Enemeez (http://www.enemeez.com) you should try them for your bowel program. Works a lot quicker than anything else I have tried.

        Comment


          #5
          hey Joshua. I see in your profile you were injured just over a month ago, that is still really fresh. Congrats on getting out of the hospital so fast. Some people think a long stay is better but I don't - the quicker you get back to real life, the better. As long as you have good transfer and wheelchair skills you will be fine, everything else will come with experience.


          Regarding bowel routine, things will get better with time. You will get to know your body and hopefully recover some feeling to be able to "listen" to what's going on down there. I did after about 4 months. I order my supps from Sportaid, they seem to dissolve quicker than the ones in the silver wrapper. Mine say "The Magic Bullet 10 mg bisacodyl contains no hydrogenated vegetable oil"


          What helped me greatly to "get back to life" after the hospital was to feel comfortable in my chair, both mentally and physically. By physically I mean that it should fit you properly, in a sense be an extension of your body. Wheeling and mastering curbs and such should get easy in a properly setup chair. After you are confident wheeling around it is alot easier to get confident being seen in a chair (this was the hardest part for me)


          I'm a firm believer in getting into wheelchair sports. At your level you might want to look into basketball or tennis, possibly canoeing/kayaking. Anything to get you out with others in your same situation- peer support (not on-line) made a HUGE difference in my mental well-being. Getting to know local people that have been through it all and "know the ropes" is a great way to learn and adjust/cope with your new-found life.


          Sucks you had to find us, but it's good you did so soon after injury. Once you get home and get confident get out and about. I see you were quite an outdoorsman before injury, that doesn't have to end - check out posts in the Exercise/Recovery forum on here by users "arndog" and "garro". These guys are such an inspiration, they don't let their injury control their life.

          Comment


            #6
            Hi "eliasnelisa" and welcome to the Care Cure Community.

            Don't stress too much about having everything done and in place to make your living space 100% accessible for you the minute you get home. Often times, it can take a while of living in your space to decide exactly what you want and need to do and what you can afford. Your plan for living as independently as you can may come in steps. For instance, if you don't have a wheelchair accessible shower when you go home, you may need to make temporary arrangements for bed baths until you determine what you need and have the construction done. Likewise, you may need more help when you first arrive home than you will need later after you have become accustomed to living outside the the rehab hospital environment.

            While you are in the hospital, start making notes about the supplies you use. Determine which of these supplies will need prescriptions, i.e., catheters, medications. Get these prescriptions from your doctors and arrange to fill them so these supplies will be waiting for you at home. Likewise, make a list of other consumable supplies like disposable gloves, lubricants, "chucks," pre-cath wipes, suppositories or enemeez. Decide where you want to purchase these products and have them ready for you at home.

            How is your bedroom set up? Will furniture have to be moved or taken out of the room to allow you maneuver beside the bed to transfer? Is your bed height about level with your wheelchair to allow for level transfers? If not, what can you do to raise or lower it? Do you have a couple changes of bed linens in case you have bladder and bowel accidents? Do you have a pad to protect your mattress from accidents? Do you have pillows for bed positioning?

            Start making notes about what your day is like in rehab and think about the things you do in rehab and how you will continue with exercises, range of motion, activities of daily living. You may find that once you are home, a evening bowel program fits better with other thing you want and need to do at home.

            Regarding the Enemeez, your rehab unit may have samples, but you can email or call the company and they will send you free samples of their two products, Enemeez regular and Enemeeez with lidocaine. The website isn't working this afternoon, but you can try later at: http://www.enemeez.com
            If you haven't used the Magic Bullet suppositories, contact the company and they might have a free sample program too: http://conceptsinconfidence.com/

            Good luck and keep us posted on your progress.

            All the best,
            GJ with a lot of help from NL (wife and caregiver)

            Comment


              #7
              It has been mentioned that your rehab should be helping to meet your needs @ home b4 you leave or atleast see to it they've been made. My rehab was adament on not letting me go until mods were done which consisted of widened doorways, accessible bathroom/shower and front/back ramps. Others were made but these were neccessary for being released.

              Trust me, you'll will being learning tricks around the house & in life for years to come! It took me several years to think of or learn things that were mindless.It seems I learn something new or hear a new tip all the time.


              Most importantly--Put things where you can reach them. My reacher is a life saver! If you share a home w/ another person---get them in a habit of keepings things in your reach. This takes x for them to get in the habit of doing so be patient. It's very aggrivating not to be able to reach the milk or to find your cereal in an upper cabinent by accident!



              Most likely, you'll face some anger & depression. That's very normal when returning home. Things are just so different when you add the disability & or chair. I know I was extremely elated to be home but by the next day, I was bitterly sad. Now it's just what it was pre-sci, my home.

              Good luck.

              Comment


                #8
                There is nothing I can add to the wonderful advice other's have given you here.
                This is a great place for information and support with lots of good people.

                Tooley's advice of getting with your peers is a good idea, especially if you enjoyed sports before.
                Before my husband came home from rehab we had to move to a home that could be modified for his needs.
                I hope the rehab you are at has helped you to do everything possible for the level of injury you may have.
                There was a lot of trial and error and mental ups and downs at first.

                Comment


                  #9
                  Magic Bullet is the way to go.

                  Comment


                    #10
                    When I was leaving the hospital after my SCI, I, too, was very scared to go home.

                    It does take awhile to get your home "accessible". Besides getting your bathroom and bedroom set up for you, start thinking of how you will get into and out of your house. You may need to purchase ramps for each entrance and exit.

                    Re bedroom, if you have a large deep headboard, you may want to remove it just to make a little more floor space. Beside the bed, I have found it better to have shelves instead of a dresser with drawers. Shelves, at the right height, allow you to back your wheelchair beside your bed (the wheels fit under the bottom shelf). This position for the wheelchair makes it fairly easy to transfer to the bed. If the bed is too high for a comfortable transfer, take it off it's frame to lower it about six inches.

                    If doorways are hard to get through, you can get special hinges that allow the door to open a little more out of the way. Also, you can either take off the striker board that the door hits when closed or just chop off the bottom 8 inches (wheelchairs are usually widest at the bottom).

                    It is nice to be able to reach light switches easy from wherever you are (bed, sofa, etc). I like switches with a pull string if the light is high up.

                    Don't be afraid. At first "home" will seem more difficult than the hospital. But you will get it adapted to you - it may take a little time but, eventually, you will find "home" the most comfortable place in the world.
                    TM 2004 T12 incomplete

                    Comment


                      #11
                      you should have some antibiotic for uti's and some nephedipine for dysreflexia.

                      the best thing you can do after going home is: realize that it's going to feel really strange for awhile because you no longer fit there anymore.

                      and to get out and go do as much as you can. sitting at home is a recipe for depression & self loathing. that's no good for you.
                      http://www.dsportsman.com

                      Comment


                        #12
                        Originally posted by wheelz99 View Post
                        you should have some antibiotic for uti's and some nephedipine for dysreflexia.
                        I think the OP's level of injury is low para, so the AD drug is not needed, and it would not be appropriate to send someone home with an antibiotic as antibiotics should ONLY be taken for true UTIs that have been diagnosed by the physician and when a C&S specimen has been collected, and the antibiotic based on the sensitivity test. It would be irresponsible and bad practice for your provider to prescribe it otherwise.

                        Oops...I see that she is indeed a mid-level para, so yes, she should have supplies (a blood pressure cuff, irrigation supplies) and meds (nifedipine, lidocaine gel 2% in a urethral applicator), etc. for AD management prior to going home, as well as a plan for management.

                        (KLD)
                        Last edited by SCI-Nurse; 30 Aug 2011, 2:13 AM.
                        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
                          Pressure sores and sleep..

                          T5/T6 SCI..this may go along with what i wrote earlier about life outside of the hospital..situations at home..im fearful of getting pressure sores while i am asleep..not being able to turn myself every so often for pressure relief..i am still in the hospital where i can be awakened by loud nurses and lights being turned on..but i dont have that at home..would i need an alarm clock to wake up and turn myself??..i also cath every 5 to 6 hours..an alarm clock would be helpful with that as well..i understand 2 hours would be an appropriate amount of time to stay in one position..any suggestions on the firmness of a bed??..brand??..size??..should i have any bars on the walls around my bed??..im usually good about sleeping and staying in one position all night..is it better to sleep on my stomach??..suggestions and experiences will surely be appreciated..thank you..

                          Comment


                            #14
                            Why can you not turn yourself? This is something your PT and nurses should have taught you how to do prior to discharge. Please ask them to work on this with you.

                            It appears you do not plan to have a hospital bed when you go home, is that correct? What are you sleeping on now?? Have you practiced doing your care such as dressing, cathing, etc. on a bed without putting the head of the bed up? Turning without side rails? Some people at your level decide to use a hospital bed initially (rental) but rarely long term. You should discuss this with your team members.

                            What mattress you use also depends on your insurance and if they will cover a pressure reducing replacement mattress and in what size. For example, I work in the VA, and we do not cover any specialty mattress size except hospital bed/twin. If one of our SCI veterans wants a full/queen/king, they must purchase it themselves. We can then only provide them a pressure reducing overlay (in a twin size).

                            Some like memory foam. I would recommend trying this before you purchase. Some complain about it being too hot, and it can be difficult to turn on yourself. A good quality foam pressure reducing mattress may be the best option for you if your skin is good. You do need to turn at least every 3 hours. Try turning every 3 hours now to be sure that your skin will tolerate this.

                            Get an alarm clock that will wake you and that you can easily operate. If you are concerned about awaking other family members with this, get a vibrating alarm clock you keep under your pillow (designed for the blind or hard of hearing primarily). "Shake-Awake" is one brand. Most people eventually learn to awaken automatically for caths and turns, but using the alarm clock now and when you first go home will help you to learn this habit. Some will tell you that they never turn, but this is not a good practice and can quickly lead to pressure ulcers, esp. as you get older. Get into the habit now.

                            You can sleep on your stomach not turn at all between cath times, but you must learn how to "bridge" your boney areas on the front of your body (toes, tops of feet, knees, pelvis) and breasts to prevent skin breakdown in these areas when sleeping "prone". Work on learning to do this yourself, and building up time sleeping on your stomach gradually. Properly done, you can lay in this position 8-10 hours without turning (except to do your caths).

                            I am very concerned that your rehab team members are not addressing these topics with you. Please insist on getting some answers and proper advice from them...that is what they are being paid to do for you right now. Hold them to their responsibilities.

                            (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


                              #15
                              I'm t6/7, 38 years post injury. I sleep all night on one side. I don't wake up to turn, ever. I may lay on my back as I wake up to straighten out the legs, but that's about it. I alternate sides every other night. Never had a pressure sore from sleeping. The only ps I've had was due to my own fault of having my footrests up too high. It healed very quickly. I do check my skin regularly.

                              Never had any sign or symptom of AD. I am completley independent and did bowel and bladder til 2 years ago when I had to have a colostomy. But that's 36 years post so can't complain.

                              My best advice to you, is to concentrate on getting as strong as you can, stand as much as you can and if you can find a fes bike to ride, ride it.

                              I'm 63 years old, I stand at least 4 hours a week, go to the gym twice a week, ride the fes at the local hosp. two times (14miles) a week, workout at home and ride my handcycle at least 35 miles a week. Also get a massage and chiropractory 2x's a week; who said life had to be tough.

                              Best way to get back into life and the social scene is to get as active as you can. Join a wheelchair sports team to learn from the guys who have gone thru what you are now. Get back to school or job.

                              I know you'll be searching for the cure etc. , I have that in the back of my mind still; it helps motivates me. If there is a cure, you have to be as strong and as healthy as you can be; if the cure doesn't come along, you have to be as strong and healthy as you can be to push your sorry(lol) self thru life. It will get better, I can assure you that. How you live your life is your choice, it's not easy at first, but again, it will get better.

                              YOu came to the right place. We are here to help each other and nudge the rookies to maximize their abiiities with what they have left. T4/5; you have plenty left.

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