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    Moving from inpatient to outpatient is scary!

    My son has been at KKI for 60 days, he is being discharged soon and I am scared to death. Trying to make the right decisions for outpatient treatment. I have seen the benefits of activity based restorative therapies and want to continue with an aggressive program. We live in Richmond VA and expect will be going 3 days per week. Eventually we hope to have our own stander and FES bike at home but for now we need to go somewhere where the equipment is available to us.

    We met with a wheelchair vendor and are also in the middle of renovating our home, adding a large bathroom and a lift. Feeling overwhelmed with his return. Any suggestions are appreciated.

    #2
    He should be more comfortable at home in his familiar surroundings. I know from experience it is always good to get home where you can just be yourself. I have full function but have a lot of pain although it is fading. I would try to be as postive as possible with him and let him go at his own pace. I have bacically been housebound for the last year because of the pain. I found it easier at home where you can exercise for a while and then rest. It has been difficult because I can't keep up to my family that are very active. Don't ever give up although you want to sometimes. I came home from a new years dinner and cried because I was in so much pain just trying to have a nice meal and I am 48 and don't cry much. Look for small gains and keep trying. It is a tough road. Don't let him get down on himself which is easy to do when you have a spinal cord injury. You have to plan your every move and decide if is worth it. Listen to what he says and don't be angry if that is all he wants to talk about because it takes up a lot of your thoughts when you are injured. He might like this site as it has been very helpful for me.

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      #3
      Sharon, Congratulations on getting ready to go home!
      Dave (my husband) came home a year ago next week. What I found out (for ourselves anyhow) is that the things I thought would be the hardest were the easiest and the things I thought would be the easiest were the hardest.
      Good luck!

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        #4
        oh, great that you are all going to be home again. you guys will be fine. I remember well the first post you made. how sad and frightened you were. so far from there! it sounds like you have things covered pretty well. I have no advise, just a prayer and good wishes. you have care cure, and I am sure the rehab will give you numbers to call if you need anything as well. what a long road it has been for you so far. good luck with the move home.

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          #5
          Yeah on coming home!! I was inpatient for 4 1/2 months and it's VERY scary making the transition but it does feel good to be home!
          I bought my standing frame off of ebay. I ride the FES 2 x week, use weights, thera bands and an arm bike at home. Just getting into a routine and staying busy and productive is what works for me.
          I'm right down the road in Roanoke. Feel free to PM me anytime. Good luck!

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            #6
            please dont forget his MENTAL state..though going home is soo nice, its gonna bring pre-injury life back even more....in hospital rehab, your around others like u,and u think about home, but being there brings reality even stronger.. i saw your old post that your son is 14...so seeing his things, maybe(bike,skateboard,videogame) whatever he was into and cant do right now is gonna be tough........3 days a week is what i did at 1st for outpatient also.....but not enough, be sure to do at home too..........especially the stretching/range of motion/massage for good cirulation........if his mind is not in it, neither will his body be.......stay strong,
            - Rolling Thru Life -

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              #7
              My son was hospitalized for 9 months (6 months at KKI) before being released. The staff at KKI did a good job preparing us for his discharge. They made sure we had everything lined up that we would need; medical supplies, equipment, doctors appts, etc....

              It was very exciting for him (and us) to be back home. We had lots of people stopping by. At the same time it was a litle overwelming. Looking back, I think some of it was because of the lack of sleep. My husband and I were both trying to do everything. Now we have split up his care. My husband is more of a night owl. So, he puts him to bed. I am a morning person. So, I get him up in the morning. This little bit of extra sleep has made a big difference.

              The other thing we did was change my sons bowel program. We immediately switched to doing it in the morning. My son was 18 when he was discharged and his friends were visiting at night. Waiting for them to leave to start his bowel program was not going to work. 3 yrs later, we still do it in the morning.

              We also drove back to KKI for therapy 3 times a week for about a year and a half. It's an hour and a half drive for us. I would guess it's almost 3 hours for you from Richmond? Can you do the 3 days consecutively and stay a Ronald McDonald or the Childrens House?

              My son still does his therapy at KKI and most of his doctors are there. We will be up for doctor appts in April and therapy in July. Maybe we can meet?

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                #8
                hi Sharon,
                I returned home on December 22 after seven weeks in rehab. It was scary but exhilarating to be home. Our biggest problems were with the bowel program -- I had more incontinence at home than in the hospital. This seems to have stabilized with going to an every other day program. It is good you have equipment lined up. My commode/shower chair was unusable and we ended up purchasing our own. We also had trouble finding caregivers who were willing to train to do the bowel program and cathing, so a lot was put on my husband shoulders the first few weeks. We still only have caregivers three mornings a week due to financial issues. Is your son going to have any home therapy? I was lucky enough to have that the first few months and the OT really helped with specific issues that I had at home.
                Also, I will never forget our second day at home. My whole family, except me, came down with the stomach flu. I remember my poor husband's pale white face when he was transferring me and doing my cares. Luckily, it only lasted a day and we laugh about it now.
                Good luck and keep us posted on how you do. Friends are so important that your son's age and I hope his keep close to him.
                Take care, Mary
                C5/6 complete 10/27/2009 MVA

                "I'm going to try defying gravity." Elphaba in "Wicked"

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                  #9
                  Congrats on getting him home! It's a long haul and when the reality of how your lives have changed actually hits you, you may be overwhelmed! We were! My son was very nervous coming home - it was scary. However, you will settle in and come to know a "new norm" for you and your family. It takes a while, try not to look too far ahead and take it one-day-at-a-time. Lots of luck to all of you. Care Cure is here for you!

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                    #10
                    Gawd, brings back memories. Big day for him, and you in a way. He's going to be excited, but underneath it's like going to someplace ... distant..., your out of sot=rts, and EVERYTHING is new, even the old, because he's going to be seeing it for the first time from the chair!Just remember it's like moving to a new home, he will have a lot of hesitation to try anything new. Be sure to calm him, encourage him to take the chances, and be there for him. Ya know, before to long it will all fall into place and it will become second nature to do things. I didn't feel comfortable in my own home for a year, it was all so new. Good luck, and hope all works out well.

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                      #11
                      going home from the hospital

                      hi sharon- i was also fourteen and had an 8 week hospital stay after my sci injury
                      from waterskiing. that was decades ago, but i remember so clearly everything about the day i was released to go home...just sitting in the back seat of the car and feeling the strange sensation of the car speeding forward...i'm not sure why that was scary, but it was. arriving home was like visiting a place from long ago--it all seemed familiar yet strange. after that things settled into a new routine, but that first day was a mental readjustment, everything was both the same and different.
                      one thing you might keep in mind is that in spite of his sci, he will still go through adolescent mood changes. I'm sure that drs., pts and ots are much more aware of this now, but i didn't get much understanding for having normal teen ups & downs, i didn't appreciate my pts and ots critical and (to me) derisive comments
                      if they thought i was slacking off during my therapy sessions. in a way it worked out though, because i'd get mad at them and figure out a more interesting or better way to rehab myself. for instance, i thought the ot exercises were incredibly boring and repetitious, so i found a musical instrument (harp) to learn to play and get more effective, interesting hand function exercise. my parents were always supportive, even on my bad-mood days, so that meant the world to me. just be aware that he and your family have an extra challenge ahead in dealing with
                      adolescence along with his rehab and make sure his team understands that, too. you'll all find your way and thank goodness you're still together. good luck and keep writing here, i'd like to follow his progress.

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                        #12
                        Sharon

                        Congrats on him coming home!

                        My son was 14 when he was injured 3 years ago. The transition to home can be rocky the first few days -- even with all the preplanning. Don't let it get you down. After a few days you get into a routine and things will get easier. It helped that my son returned to school fairly quickly because it gave him the social interaction he needed and a sense of normalcy that was priceless.

                        He did out-patient PT 3 times a week and eventually did PT in the pool as well. It eventually cut down to twice a week. After nine months, he graduated from outpatient and just did a routine at home that his PT developed for him.

                        I know how easy it is to focus solely on recovery and PT, but don't forget to take time for life. Matt was able to go to the movies, etc. and do things a normal teen would do.

                        It will be exhausting for you at first. Hang in there and remember that things will get a little easier every day.

                        Also, keep in mind that durable medical companies know squat and make sure to review all the options for a wheelchair. Don't be afraid to ask tons of questions -- the equipment thread here is a great help.

                        Hope that helps. Feel free to send me a message with questions.

                        Best wishes.
                        Ugh, I've been kissed by a dog!
                        Get some hot water, get some iodine ...
                        -- Lucy VanPelt

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                          #13
                          It has been SOOOO amazing reading all of your posts...its like you have been with us these past few days, all the same expereinces, just a differnet time and location.

                          The first night home was very difficult, he cried and screamed "I cant do this" first time Ive heard that from him since the injury. Each night since has gotten easier, we've made minor adjustments to his bed, room temperature, bp, etc..and we are figuring things out.

                          The most beautiful sight was watching him outside when his friends came over, first he explained to them how he was feeling, showed them parts of his chair, let them ride the lift in our garage and next thing I know he was racing down the cul-de-sac with friends running on either side of him. I watched from the window and cried tears of joy..Ive been so proud of him!

                          Today we start PT downtown Richmond at VCU. Thank you for all the encouragement and compassion.

                          Sharon (Robbies mom)

                          Comment


                            #14
                            Originally posted by SharonD View Post
                            It has been SOOOO amazing reading all of your posts...its like you have been with us these past few days, all the same expereinces, just a differnet time and location.

                            The first night home was very difficult, he cried and screamed "I cant do this" first time Ive heard that from him since the injury. Each night since has gotten easier, we've made minor adjustments to his bed, room temperature, bp, etc..and we are figuring things out.

                            The most beautiful sight was watching him outside when his friends came over, first he explained to them how he was feeling, showed them parts of his chair, let them ride the lift in our garage and next thing I know he was racing down the cul-de-sac with friends running on either side of him. I watched from the window and cried tears of joy..Ive been so proud of him!

                            Today we start PT downtown Richmond at VCU. Thank you for all the encouragement and compassion.

                            Sharon (Robbies mom)
                            The story about his racing his friends made me smile! What a joy! Reintegrating himself into his peer group will make a world of difference, psychologically. Since my own SCI, I have often thought of someone I knew who had a cervical-level SCI during high school. Eventually, he was able to walk again and when he'd get out of his chair at school, one of his AB'd buddies would always end up in the chair riding up and down the hallways trying to do tricks...lol. I'm glad his friends are sticking around!
                            "The truth will set you free. But first, it will piss you off." -Gloria Steinem

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                              #15
                              I just want to say hang in there, and take each thing as it comes. Try not to get overwhelmed. It WILL be ok.

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