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Thread: My Son Suffered A C-4/5 SCI Last Sunday....

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  1. #1
    Senior Member
    Join Date
    Sep 2006
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    Baltimore MD
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    My Son Suffered A C-4/5 SCI Last Sunday....

    ......and I don't even know where to begin.
    He's in the Shock Trauma unit at U. of Md. Hosp. in Balto.
    They've done two surgeries at C-5 (anterior & posterior) to decompress. He can't breathe on his own.
    He's asthmatic- panic stricken with the intibation (claustrophobia, I think too) , and feels he can't breathe. His eyes are wild with fear. They've been keeping him sedated- he's thrashing around and gasping- around his respirator tubes. Its like watching a dying man take his last breaths. I'm very afraid but can't show that to the rest of the family (ex-wife, his brother, sister & significant other- mother of his 2 yr old son). He's 33. I don't get along with my ex. She's wailing and moaning over and over and over.....
    Someone on my Periph. Neuro. site, suggested I register here. I don't know what to do !
    Bob B
    SCI - Parent

  2. #2
    Bob, I'm so sorry your son and family are going through this. I'm glad you found this site. It has been a godsend for me. Not only will you find important information but you will find hope here.

    My son was injured about a year ago. Doctors give little hope of recovery in many cases. It seems they just don't want to get your hopes up. My advice would be to never give up the hope. We have experienced some recovery where we were told there would not be any. If we would not have pushed beyond what we were advised, we never would have known that additional recovery was possible. Stay hopeful. It's a very, very long road. There will be setbacks. Don't look at the progress from day to day but rather month to month.

    Remember your son will take his cues from those around him. Stay positive and seek the best care.

    Your family is in my thoughts and prayers and I hope your son is on the road to significant recovery.

  3. #3
    Hi
    It's difficult to say anything to you which can ease what you or your son is going through at the moment, the only thing I can do is to say that you are in the worst of it at present.
    My injury was virtually exactly the same. Dive into shallow water, C5/6 injury but no surgery required other than a halo to stabilise my spine. The first 48 hours are pretty scary, I'm also asthmatic and hated being intubated. It didn't last for long, although your son's panic may be contributing to its inability to breathe on his own well. The main thing to be doing the spending time with him, reassuring him, talking to him about things which aren't necessarily to do with his current situation.
    I can only really tell you what helped me but I hated people coming in with faces that looked like they were staring at my corpse. He is exactly the same age that that was when I was injured, old enough to understand the seriousness of it and hopefully begin to recognise how he can take positives and set his mental attitude towards recovery.
    Other people here are far more knowledgeable than me but at this early stage he may still have an excellent chance of recovering far more function than many of us do. Don't let him fall into despair at this stage. I use a wheelchair full-time and have recovered very little function beyond what I had within the first few weeks but in the context of what I now know about spinal injury I recognise that it could have been a lot worse. That is a difficult concept to get across to somebody newly trapped inside their own body but if you can begin to research spinal cord injury are little bit more via this site hopefully you'll understand and be able to convey that to your son.
    Please don't hesitate to ask any questions, nobody here really minds sharing personal details about their injury and how they live their lives.
    C5/6 incomplete

    "I assume you all have guns and crack....."

  4. #4
    I live in your region and can possibly help some. First call the Christopher and Dana Reeve Paralysis Resource Center at 800-539-7309 and as to speak to aninformation specialist. If sending an email is better, go to www.paralysis.org and choose the "Contact an IS link" You will be sendt lots of information to assist you in making a good decision as well as in better understanding what is happening. Look towards rehab, it is a big step. I am attaching a document that will help you make an informed choice.

    You have the RIGHT to select where rehab is done at, you do NOT have to go to where Shock Trauma suggests. Get busy exploring your options.

    Ask away, folks here will help.
    Every day I wake up is a good one

  5. #5
    Senior Member
    Join Date
    Dec 2005
    Location
    Perth Western Australia
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    5,197
    Bob, hello from the other side of the world, sorry to meet under these circumstances. You will cope with this and youve come to the right place, my daughter also panicked when she woke up with the tubes in. What you are describing is almost exactly the way she reacted. What you can do and im sure you are doing is just keep comforting and reassuring your son, what he does not need now is people around him wailing and crying. I would suggest a sit down with your family to discuss this even though you are all still in shock, reassurance is very important at this stage. Youve got a road to travel but we are here with you. Your son and you and your family are in my prayers.
    Last edited by IanTPoulter; 09-08-2006 at 12:10 PM.

  6. #6
    My son also has a spinal injury. Please feel free to contact me directly when questions arise. At the moment, just being there for your son is what is important. You may feel helpless but your presence will reassure him.

    Take Cheescake's advice and contact the CRF Resource Center. They will help you understand what to expect in the days and weeks ahead.

    This site is also loaded with great information and hundreds of individuals who are willing to help. Use us...

    John
    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

  7. #7
    Senior Member
    Join Date
    Sep 2006
    Location
    Baltimore MD
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    My cousin contacted the CRF and they emailed me about 10 files to start.
    I'll try ro pick them up again from there.My computer here at work is acting very strange and its difficult for me to work on it. My display properties have gone awry.
    I'll try to get on the home system tonite, after I get back from the hospital about 10:30-11:00, or so.
    I'm not sleeping well anyway.
    Bob B
    SCI - Parent

  8. #8
    Sorry to hear about your son. This is a terrible time for you, him and your whole family. You've done well to find us so quickly. We've all been there, and survived it. Re-read the post by Rehab Rhino. A few points I'd like to make about his post. He was injured the same way, similar injury level, in many ways a story comparable to your son's. The really pertinent part? Rehab Rhino now lives independently, has a full social life, a lucrative job, an enviable apartment in a major British city. He has a fulfilling life and I hope you'll look to him as proof that this horrible injury need not be the end of your son's world. Keep the faith.

    Below is a link to an article Dr. Young wrote about crucial knowledge for people and families when they are newly stricken with SCI. I hope you'll read it, print it off, give it to the ex and all the scared family members. It's reassuring and it's not sugar-coated. It will answer questions you have and help you ask your son's doctors the right questions as you proceed down this new road you've landed on.


    http://sci.rutgers.edu/index.php?pag...3@AcuteSCI.htm

    Sorry about the ex. This is the time to rise above that problem. You simply MUST. Don't forget to take time to recharge your own batteries, you have to stay healthy for your son. Remind your other family members of their value and their need to take care of themselves also.

    Please remember that many of us SCI'd are parents...know that your grandson will be OK. He still has a daddy.

    Watch your son's skin. He needs to be turned every 2 hours, don't let the nursing staff slide on this. That's the thing that sets us back most as we enter rehab. Insurance companies don't give us much time for rehab anyway, don't let him be held back by this common oversight.

    A lot of his panic may be coming from the sedatives. Morphine can cause terrible hallucinations. He will probably calm down pretty soon. It's scary, must be awful to watch, but it's temporary. Keep reminding him where he is, what day it is, what time it is, that helps. Tell him his son is fine, who is looking after him that day, that the bills are being paid, dog being fed, child cared for, any things to reassure him about what might be scaring him right now. Look into finding a communication system, like a pointer he can use with his mouth, for this hopefully temporary period while he's unable to speak.

    Well, I guess that's enough bossing for now. Remember the article by Dr. Young. Remember that you currently have NO IDEA whatsoever of your son's ultimate prognosis. Remember that we are here and we are happy to answer questions and provide support. Contact the people cheesecake suggested at the Christopher Reeve Paralysis Center. That may be the best offer you'll get in your life.

    Good luck.
    Last edited by betheny; 09-08-2006 at 06:18 PM.

  9. #9
    You have received excellent advice from our members here. Please keep us informed, and don't be reluctant to ask any and all questions.

    Fighting the ventilator is common. Generally sedation or even paralyzing agents are used to control this, but with a new SCI they are often reluctant to do this as it can make weaning more difficult and make it more difficult to assess any neurologic changes that are occuring. I would encourage you to request (demand if necessary) a family conference with his health care team to discuss their plan for management and begin the discussion of planning for the move to a rehabilitation center when he is ready. Be sure it is a specialty SCI rehabilitation center. It is best if it is a Model System SCI Center or at least a CARF accredited SCI rehab center (it should be accredited specifically as a SCSC or Spinal Cord System of Care).

    I would second the comments about his skin. He should also be on a special pressure reducing mattress, and someone from the family needs to inspect his entire body skin with the nurses at least twice daily (to be sure that it actually gets done). The Shock-Trauma center in Baltimore has a good reputation, but this is an area in which you cannot be too careful.

    Also be sure he is being seen by an OT and that there is a plan in place for proper positioning of his arms at all times. This is so important to both maintain range of motion (which will be critical even without motor return, but equally important when and if return should occur) and to prevent long term pain problems due to adhesive capsulitis. The nurses should also follow these guidelines whenever he is turned and positioned. This is something that you and other family members can also learn and monitor.

    Talk to him and touch him to help him be more calm. Be sure you are touching him someplace he can feel (like his shoulders and face). He may not be able to tell that you are holding or patting his hand. Just be sure that such touch is not causing him pain.

    If they have not worked out a communication system for him yet (using a board with eye movement or blinks) insist that they do so now. This is something that should be standard in an ICU setting, but often is not implemented soon enough.

    As I said, keep in touch. Get enough rest for yourself too. It does not help him if you get ill.

    (KLD)

  10. #10
    Senior Member
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    Sep 2006
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    Baltimore MD
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    Quote Originally Posted by SCI-Nurse
    If they have not worked out a communication system for him yet (using a board with eye movement or blinks) insist that they do so now. This is something that should be standard in an ICU setting, but often is not implemented soon enough.
    I'm sorry, but - what is a 'board' with eye blinks?
    I don't understand? Sorry for my ignorance.
    We have a Family Meeting with different depts. 'team', neuro, critical care, etc, - on Monay afternoon and I'm trying to absorb as much info as possible, and formulate questions. Our biggest concern is his panicking due to childhood (and teenage) asthma. He keeps mouthing he can't breathe and they are keeping him sedated, a lot. Yesterday he was put in a chair to sit up for a while, I'm told. He was on CPAP(?) setting for his respirator starting about 3-4pm. By 9pm he was tired and they put thie other setting on, but he was helping to breathe for a while. When I left about 10pm, he was gasping again (not fully conscious) and they gave him a double dose of Haldol to settle him. He shakes his head 'no' for just about everything offered in the way of help, when I do see him alert. I wanted to have someone come by and talk to him (a previous intibated for 3-4 weeks, and ventilated patient- husband of a co-worker)- he shrugged 'no'. Because of the decompression surgery anterior, they say they can't 'vent' him til 7 or so days after (that was last monday).He's a very headstrong, easy to anger, short fuse, reckless personality. I know he's making things harder for himself, but we don't know how to help him. I don't think he underdtands anything, except that he's in a hospital and that he's paralyzed. He just wants to yank out his tubes and walk out.
    He was running a 103 temp lat nite and they said that an infectious disease specialist would have to 'culture' him and look into it. they suspect its in his lungs. he has so much fluid build up and is 'puffy' all over. I'll see him about 5 this pm.
    Bob B
    SCI - Parent

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