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Thread: Nephew has new C4,5 SCI

  1. #11
    Senior Member Zeus's Avatar
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    Georgia,

    I'm terribly saddened to hear about everything that your family is going through. To say it is heart-breaking is an understatement. Your family will be in my thoughts and prayers. You have received a lot of very good advice, and I will try and avoid re-hashing it.

    What I can tell you from experience is that life does go on. I became a complete C5/C6 quad at age 7. I am 31 now and have, over the years, graduated dux of my high school, earned economics and law degrees with honours from Australia's oldest university, worked as a corporate lawyer for 4 years, and will soon be embarking on a Ph.D in law.

    It is a cliche, but all a child really needs to succeed is love and support. If your nephew has these he will flourish despite the many hurdles he will face. I have two immediate thoughts (I'm sure more will surface):

    * your nephew needs to focus on his recovery right now, but longer-term a quad's single greatest asset is a solid education; and

    * your family needs to ensure Grandpa's emotional needs aren't ignored and that your nephew's siblings are similarly not 'ignored' - my 9-year-old sister was inadvertently ignored for a good year while everybody focused on poor me (in my case Grandpa was the only one that put my sister first).

    Take care and keep us updated.

    Chris.
    Have you ever seen a human heart? It looks like a fist wrapped in blood! Larry in 'Closer', a play by Partick Marber

  2. #12

    Next update on Austin

    Thank you, Robynbird for sharing your story. As much as it pains me to hear of others' stories, it also helps us feel not so alone. I am sorry for what your family went through, but it is so wonderful to hear how your daughter has progressed so much and it gives me great hope. Thank you for your post. Thank you to everyone else as well who sent private emails. You are all a wonderful group of people and I am so glad to have found you all.

    As for Austin, he went in a reclining wheelchair for the first time yesterday!! He was sooo happy, you couldnt have torn that smile off of his face. The first time he had been out of a bed for 15 days! They tried attaching the piece to his trach so that he could talk yesterday as well, but he had a hard time and its going to take some practice. He forgets to breath through his mouth once its on, so he starts to hyperventilate. But we got him to very lightly to say a couple of words, and it was SOOOO nice to hear his voice again! They may put the smaller trach in today, and hopefully in a couple more weeks they'll take it out completely. We are just praying that everything heals up in his neck from the surgery that they did to repair his esophagus and windpipe. They already had to go in a second time because it reopened from the first time that they operated.

    He is still only moving his arms, but they are gaining strength every day because he can lift them up just a little bit with his wrist/hand splints on and those things are very heavy! So we are happy with that, and we continue to pray that he will eventually get his hands.

    Another thing is that he remembers some of the accident. He also has been asking questions and he's talked a lot to Grandpa. He told my dad (Grandpa) that he and his brother were heroes for saving his life. Thats when my dad lost it. I felt so bad and so good at the same time. I know my dad is still blaming himself, and Im sure he always will. But just to have Austin say that was so wonderful. And when they put him in his wheelchair yesterday, they asked him who he wanted to be his driver he said Grandpa. We all had to do our best not to bust out bawling in front of him! I am so happy to hear him say things like that, but I also cant help but be scared that he doesnt fully know all of the details of the accident, and Im afarid that if he doesnt know that it was Grandpas gun that fell, that maybe when he finds out he will blame him. Even if he does, I know thats going to be a normal response, but it breaks my heart to think of it. I know if he ever got angry with my dad it would kill him. Ive never seen my dad look so old before, and I am scared to death of him having a stroke or a heart attack or something. My dad's not super old or anything (hes 63), but he just looks so old now. But I just hope that he will do his best to take care of himself so that he can be there for Austin.

    Well, I dont want to write a novel, but I just wanted to let you all know how Austin and our family are doing! Thank you for all of the thoughts and prayers, and any more updates I get I will pass along. I also look forward to reading any more uplifting stories you all would like to share!

    Thanks to all,

    Georgia

  3. #13
    Thank you for updating us. I'm pretty jaded but I'm fighting back tears. God bless Austin and his Grandpa.

    The arms, being upright, trying to get the trach out, all HUGE improvements.

    Keep watching his skin. Don't trust the nursing staff to do this. Skin breakdown slows too many of us down before we ever get to rehab. Have you decided to send him to Rancho Los Amigos for rehab? (I can't vounch for it but I've heard good things.)

    Think hard about sending him to Shriner's-I think the one in Philadelphia is the SCI one, but SCI-Nurse can correct me if I'm wrong. Even though it's a million miles away I think I'd move heaven and earth to get my kid in there. They specialize in pediatric SCI, as I understand it.

    Austin is the age my son was when I got hurt. I'm forever grateful I had the random accident, not him.

    Again, thanks for the update. Any questions, fire away. We're here and we do care.

  4. #14

    Rehab

    Thanks, Betheny, for the kind words. We are going to look into some rehabs tomorrow, but Rancho Los Amigos sounds like the best so far. But I will def. look into Shriner's. I got an e-mail from a wonderful lady whos daughter went to Rancho, and she said they are great. But like you said, wherever is the best is what we want. I talked to my mom a little while ago and she said they are going to put in the smaller trach today, so we are happy about that. That means we're one step closer to getting it out! He has a little cold right now, so he's needing to be suctioned a lot, but they're pumping in the antibiotics so hopefully those will work fast.
    Georgia

  5. #15
    Senior Member BeeBee's Avatar
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    http://www.zebray.com/index.asp?mode=archive

    This is a link to a current on-line journey of a family whose daughter had a spinal tumor. She went to Shriners, that's why I'm providing this. You might take a look to gain some personal insight into the Shriner's experience. BTW, she started as a complete C2 with a trach, and now walks with crutches.
    BeeBee

  6. #16

    Question about diagnosis

    Could someone explain to me the difference between a complete and incomplete SCI? We just found out today that Austin is a C5 complete. Is that bad, Im assuming? Does that mean that no part of the spinal cord is intact?
    By the way, he got to go in his reclining wheelchair again today, and he went OUTSIDE!!! Definitely the best day yet. He got the smaller trach in and he is talking very well with the "paci" (sp?) valve. We are still just praying for his hands to come back, but every day is better! Probably another 2 or 3 weeks until he goes to rehab. Havent decided where that will be yet, but will keep you posted.
    Thanks for any info!
    Georgia

  7. #17
    Just because he appears complete today does not necessarily mean he will remain that way. It is way too early to say for sure.

    I would suggest that you read Dr. Young's article about levels of injury and classification of injury. I am assuming they actually diagnosed him as C5 ASIA A.

    http://sci.rutgers.edu/index.php?pag...nalLevels.html

    It would be wonderful if his hands came back, but don't put too much emphasis on this right now. He may see not getting return as a personal failure and perceive that he is "letting his family down" if this does not occur. Only time will tell. Even if he does not get full arm/hand function back, there is so much he can still do, and that is what rehab is for. His young age is definately in his favor.

    The trach speaking valve is a Passey-Muir valve. Glad it is working for him.

    (KLD)
    Last edited by SCI-Nurse; 10-18-2006 at 11:10 PM.

  8. #18
    Senior Member Zeus's Avatar
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    KLD gave you excellent advice (as always!). When I awoke in the ICU I literally could not move my arms. Within three months I had basically settled into being a C5 complete. Some recovery in the first few months right up through the first year is the norm, not the exception. Austin is already taking great strides forward.

    Complete 'generally' means that you have no sensation or movement below your lesion level. Given modern treatment of SCI in the initial stages a lot more people are incomplete now than decades ago.

    Incomplete means there is some movement or sensation below the lesion site. This tells you the word 'incomplete' doesn't really specify much, hence the newer ASIA classifications.

    For example, an incomplete C5 quad could just be a complete C5 who can also wiggle their big toe. Once you start talking about incomplete injuries everybody's function level becomes very unique.

    Chris.
    Have you ever seen a human heart? It looks like a fist wrapped in blood! Larry in 'Closer', a play by Partick Marber

  9. #19

    thanks!

    Thank you both for the replies. That was a really good article. Austin has a great attitude so far. But like you said, I hope he doesn't give up if his hands in fact don't come back. He was asking yesterday to do some homework! So he is a very srong and determined young man, I tell ya.
    I hate to keep asking questions of all of you, but I have a 2 year old and a one year old, and sometimes it's really hard to find time to do a lot of research on the computer. I have this page on my Favorites, so its easy to jump to when I get a minute. So if I may, I'd like to bother you with one more question..what will the future be like for him as far as marriage/children? I know he can get married if the right person comes along, of course, but how will this affect his relationships as far as having children?
    Thank you all again, and Im sorry for bothering you with so many questions!
    Georgia

  10. #20
    Hi, Georgia,

    My son was injured a year ago when he was 15. One of his biggest worries was that he would never be able to have kids. That is so not true as you will learn.

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