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Thread: Moving from inpatient to outpatient is scary!

  1. #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.

  2. #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

  3. #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)

  4. #14
    Quote 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

  5. #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.

  6. #16
    So good to read your most recent post.

    We found that my son had good days and bad in terms of adjusting mentally -- way more good that bad and the bad ones came in bursts and didn't last too long. Usually, when he does get down I go through a mental list of things that help -- get him something to drink in case he's dehydrated, a snack in case he is low on fuel, offer to play video games or board games with him, etc. Usually the drink and the snack do the trick.

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

  7. #17
    Cool - that's a real good sign!!! It brings back a memory I have of my wife being surrounded by a small crowd, mostly pre-teens in a not very nice part of town - at first we were a little apprehensive, but they turned out to be nice kids, wanted to see her chair and know all about it. It was a nice interchange.

    PeanutsLucy mentioned that the DME people know squat. It took us a while before we realized that. It's too easy to accept whatever they say, particularly when you're still learning. Question everything. Although they can be friendly, they don't necessarily put your son's best interests in the forefront - they're interested in making as big a sale as they can, and apart from having seen it a few times, they do not necessarily know any more than you do about the equipment they're selling.

    There will always be the occasional bad and frustrating days - after all, it's a real shitty thing that's happened to him - but with time will come acceptance.

    Best of luck to Robbie - and you and your family.
    - Richard

    Quote Originally Posted by SharonD View Post
    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!

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