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Thread: New C2 SCI in Jackson MS

  1. #11
    Well, we are getting everything together to leave Shepherd. We are going to miss everyone here. The staff are wonderful and I just can't say enough good things about the care Adam has received here. I will definately be logging on to this forum daily to get as much information as I can about caring for Adam at home. Thanks to all of you for all the support and information you have offered all ready. Wish us luck!!

  2. #12
    I wish the best of luck to both you and your son. I hope the coming months will bring good health and recovery.

  3. #13
    Here's another point of view- biased of course.
    Healthcare professionals try not to be negative, they do try to be honest, realistic & prepare pts. and their families for the possibility that they may not recover all, or any function at all. Also, some people tend to want to wait till their function returns before they go home, do therapy etc..and since this can be a very long road, we have to encourage patients & family to learn what they need to learn because their insurance etc... will not just let them sit in the acute care or rehab hospital.

    It is almost impossible to predict 100% of the time how much function a person will get returned. But believe me we are happy when that happens!!! And they no longer need the things we taught them or the equipment etc....

    CWO

  4. #14
    Senior Member kickinglamb's Avatar
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    Nov 2005
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    where no one has gone before...SW Pennsylvania
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    dear doris,
    i am sooo sorry to hear about your sons accident and injury. i am an c-6 but my injury is complete. after my surgery to fuse my arthritic neck, the docs weren't even sure i'd get off the vent or move anything from the top of my shoulders down.
    well, i don't have much movement but i can use some of my arm and wrist muscles, so i can move my arms well enough to feed myself w/special fork and spoon. i can sketch and sign my name with a special splint (I WAS A PAINTER BEFORE MY INJURY) and i type on my keyboard with my page turner, there is also voice recognition software that i use.

    keep in mind that his injury IS incomplete which greatly increases his chances for further return for a longer period of time.

    you, your son, and your family are in my prayers,
    and i please let me thank you, it's not often i take my mind off my injury long enough to pray for someone else, i hope you accept them,'
    lori
    Please Visit My Blog at: http://queenquad.blogspot.com

    But those who wait on the Lord
    Shall renew their strength;
    They shall mount up with wings like eagles,
    They shall run and not be weary,
    They shall walk and not faint
    Isaiah 40:31

  5. #15
    want to talk about a super kid with just a great attitude? Adam is ''the man''... as i turned the corner this past Wed. to go to his room, all i heard was ''Jazzyjeff'' coming from this good looking guy in this room that i figured had to be his.. we chatted for a bit and i was pleasantly surprised that Adam had such a great voice for being on the vent.. his laugh, at me, was so funny in itself, i think we hit it off as buddies.. i just wished i had met him, his dad, and stepmom Doris sooner because they are leaving Monday morning and are such great ppl.... good for Adam to be getting to get out of rehab and onto starting his rehab with the help of his family.. i can tell that he is loved so much and my heart goes out to Doris for stepping up and being the wonderful person that she is... she posted a thread b4, but i will refrain from linking it here w/o her permission, but will tell you that he is in a good place now... this kid has the determination, heart, and will power that i hope very soon that we see a follow-up post here saying ''vent who?'' being a thing of the past.. i am pulling for you buddy.. Jazzyjeff





    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

  6. #16
    Well, we are home now and getting into a daily routine. Adam is still in very good spirits but is starting to get a litte bored. We just got word from Shepherd that he will be going back June 7th to be tested to see if he is a candidate for the pherenic nerve pacer. If all works out, he would have the surgery the following week. So say some prayers, he/we would love to see him get off the vent. Once we get a van, we will be able to get him out more and do some things, but right now we just do the daily stretching and exercises and massage. He has a great appetite so we have fun cooking and having family meals together. Well, thats about it, just wanted to check in and give you all an update. Thanks for all the support and information that all of you have shared with us.

  7. #17
    Member
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    Mar 2003
    Location
    Green Brook, NJ 08812
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    57
    Be patient with weaning him off the vent. They told me my son (C3/4 complete)would NEVER be off the vent. I knew he could. He was in Rehab for 6mos. after his accident & about 2 months after he got home we made it our mission to get him off. We actually did it on our own because every doctor I went to "tap danced" around the whole idea of taking him off. Took a couple of months to be fully off, but he did it. He was on it for 1 year total (from time of injury to time of wean).Don't listen to everything they tell you.When he got off we went back to the hospital he was in to visit the doctor (who told me he would be on forever), it was sweet!!LOL LOL. Think positive, be patient, and keep a sense of humor, it can be done!

  8. #18
    Just wanted to share some updates on our son Adam. We just returned from the Shepherd center where he went through a series of tests to see if he was a candidate for the diaphragm pacer. Everything went great and they said he is a perfect candidate! So we head back to Atlanta on Saturday and he will have the surgery on Monday the 19th. We are all so excited. They said because of his age and the fact that he is in such good shape (other than his injury) that he will probably wean off the ventilator in about 10 weeks. They just got FDA approval at Shepherd so Adam will be the very first to receive the pacer there. If anyone else has received the pacer from the Cleveland Clinic we would love to hear from you.
    Other than that, he is adjusting very well being at home. We got a van so he can get out and about now, we are loving that. And just yesterday we discovered that he can move his left thumb! So great things are happening around here and I just had to share with you. Thank you to everyone who has PM'd us with your kind words and encouragement. Hopefully we can get this dragon software figured out and Adam can get on here himself.

  9. #19

  10. #20

    Back from Surgery.....

    Well we made it back after surgery and also after another trip to have the battery hooked up to the pacer so that we can start the weaning process. It really is amazing technology and so great for anyone on a vent to have an option. Anyway, they first hooked him up and he was only able to stay off the vent for about 4 minutes. He had a mucas plug almost immediatley becasue the lower lobe of his lungs were stimulated for the first time and that broke some secreations loose. The next time was 15 mins. They told us once we get home just go little by little. We measure his tidal volumes 3 time during each session to make sure his is getting high enough volumes to continue. We have been home now for 2 days and he is already up to 1 hour sessions 4 times a day. The doctor said the record now to wean off the vent completely is 2 weeks 2 days, so of course Adam is going to try to break that record. He gets really tired and sore though using the pacer. I guess it is because he is exercising muscles that havent been used for 4 months. But all and all he is doing great. SuzieQ do you have the diaphragm pacer or the phrenic nerve pacer? Are you off the vent 24/7 now? Thanks to everyone for all your prayers and well wishes from this forum. This really is a great place for everyone who is a SCI or is a caregiver or friend of a SCI. You guys are awsome!

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