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

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    #16
    Bob,

    I suffered a c6 injury about 6 months ago. I remember not knowing I was paralyzed when I woke up so I didn't panic like your son. What I did know was that whenever I woke up and opened my eyes there was always a loved one watching over me and smiling. Just having them there being comforting, smiling, and always re-assuring me that I was going to be fine, was all I needed to help pull me through. As most have stated that is sooooooo important.

    They also had me sitting up in a chair a few days after surgery. If I knew then what I know now I would have been in that chair at any time possible! Not only did it help get working on blood pressure it just made me feel more... human again.

    Coughing to me was the scariest thing... I felt like I was going to die anytime I had flem stuck. Just calm him down, big SLOW breath through the nose, and cough that sucker out. Being kept calm was most important.

    Do what you can to keep those doctors from telling him depressing things... no one wants to hear 'you wont walk again', instead say something like 'with hard work and determination its possible to get on your feet again'.

    Sorry I'm not so good at advice, but i hope i helped a little.

    I'll leave you with this, whenever someone, usually a doctor, is giving me news like, 'you wont be able to blah blah blah etc. anymore', i keep in mind what my surgeon told me in ICU about others thoughts on recovery.

    "Doctors are as useless as tits on a board, if you know you can, you will."
    Injury Date : Feb. 23rd 2006, c6 Incomplete.

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      #17
      Thanks for explaining the 'board'.
      His neck is stable (they put in titanium disk relpacements & plates & screws) & needs time to heal from the surgery. He's in a neck brace.
      Thre's a family meeting is set for Mon (my wife will be there - shes's an RN & 'vent' unit supvsor- different hospital- different dept) with all the different medical teams working on him. He has to tough it out for a few more days until surgical gives the OK for a 'trake'. He'll still be on the 'vent'.
      The infighting still goes on with my ex (she's a RN - nursing care facility)..... His brother & sister....... & his partner.
      He's kept sedated a lot and that's not good for his lungs (there's fluid).
      They sit him in a chair (special) once a day to help the lungs. He still can't communicate well,. but when he does- he says he can't breathe. He's managed to get his tubes out of his mouth/throat 3 times. He's a difficult patient. He can move his arm(s) up towards his mouth & tries to take the tubes out, but he can't use his hands- but he says he can feel when we touch them (I'm not sure about that- tho).
      Everything is on 'hold' and all we do is wait for the next day and what it brings.
      I'm tired, both physically & emotionally.
      __________________
      Bob B
      SCI - Parent

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        #18
        Bob
        Just know that you are in my thoughts and keep using this board to vent. There is nothing I can do to ease this for you or him but I really feel for you. Just keep encouraging him and we will keep encouraging you.......
        (((((((hugs)))))))
        T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

        My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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          #19
          I saw him yesterday afternoon and he was in the chair again.
          They had re-intibated him and re-positioned the tubes. He was
          much calmer, but still sedated and hardly opened his eyes for the whole time. He wasn't fighting the respirator. I was taaking every breath with him in rythm to the machine. He was resting a bit easier. Family meeting with docs this afternoon.
          Bob B
          SCI - Parent

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            #20
            I wouldnt consider him a 'difficult' patient, just a normal reflex due to not being able to breathe comfortably. I extubated myself twice during my hospital stint, and I dont remember doing it either with all the drugs in me. He's not being a pain, but probably having problems breathing. What are his sat levels? I remember anything below 91 or so I started to get panicy with the 'holding your breath even though you are breathing' feeling after I finally got trached and was alert enough to notice. Not fun having lungs that dont work right.

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              #21
              Hi Bob

              I just wanted to write and tell you Im sorry to hear about your son, it absolutely breaks my heart to hear of a new SCI.

              My nephew, Jeremy, accident was June 16 so we are just 3 mos post. He fractured his C5 with his SC injured at the C4 level complete.

              What you are describing is exactly were we were 3 mos ago. I know its terrifying - but you have to take care of yourself mentally and physically so that you are strong for him when he becomes more alert. For Jeremy I think it was 2 or 3 weeks before he was actually "there" with us. The morphine he was on caused him to be very combative and hallucinate so much that it scared me to death.

              He was intubated as well and had to be sedated to keep from thrashing until the trach was inserted which was almost 2 weeks I think. He acquired pnuenoma (sp?) and was treated with antibiotics. The pnuenoma has been the battle so far, he has it now for the 4th time and they have inserted a pic line to administer the antibiotics.

              He entered rehab about a month post accident and listen to what everyone is saying about choosing the right rehab a model center if possible. The Rehab Jeremy was in wasnt skilled in SCI. Jeremy actually to tell some of the nurses about his care and they didnt recognize autonomic dysreflexia which is VERY important.

              Go to the Chris Reeve site and request they send info - the book they sent us was so informative - as was this site and all the great members.

              This is a long tough road and at times it doesnt seem real but things will be okay. Although I am a newbie if there is anything I could help you with do not hesitate to ask!

              You said your son was headstrong - thats great. That will become a great asset on the road to recovery. Trust me - I see it.

              God Bless You and Your Family!

              Dawn

              Comment


                #22
                Thanks, all of you- for your supportive concern and advice.
                We had another scare yesterday, (I'm sure it wont' be the last)- the hospital thought that he had a P.E. (pulmonary embolism) and were going to have to put in a Green...something---("green-field" ?) filter to catch the clot.
                They did a venogram and it was clear.
                On an up note, while they had him in the O.R. & MRI & CAT, they finally put in a 'trake' last night. (His Shock Trauma nurse called at 3 am to say he was fine and the test was clear)
                When I left him they were getting ready to wheel him to the OR.
                The family meeting was a bust. Nothing except finding out that he's not cooperative and they haven't been able to get a decent neuro exam to make any evaluations. (Basically, they said thier job was to stabalize 'em and move 'em out ) No info on degree of severity of damage without ability to do good neuro exams. If they can't get a good neuro exam, Its up to the rehab hospital to find out what the extent of his damage is. For now, we don't know. Maybe (with the tubes out) - he'll be able to concentrate on something else, and give them some cooperation.
                I hope when I see him tonite, things'll have a different perspective.
                Bob B
                SCI - Parent

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                  #23
                  Bob, I wish things were easier for you. If it's any consolation, many of us here have experienced the same events that your going through. You mentioned that there was a concern of a pulmonary embolism and putting in a filter. My son did have a filter put in as a precaution. He didn't have a clot while in the hospital but did have one about 8 months out. His doctors recommended putting one in while he was in ICU. It was a relatively simple surgery. No surgery is without risks, but compared to his other 6 surgeries this one seemed to have the least risk. You might want to talk to his doctors about this. Perhaps others here on CareCure could share their experiences.

                  It seems your biggest obstacle to moving forward with any type of recovery is your sons struggle to remain calm. My son too, tried to pull his tubes out. He had to be tied down. The trach should make him more comfortable. The only thing I can suggest, and perhaps your already doing this, is to tell him he's doing well and it's important for him to stay calm so his body heals. Is there a particular type of music that he likes to listen to? If so, maybe that would help to calm him. My son is a country music fan and we turned on the country music station on TV. I really think it helped. If nothing else, it helps to detract from all the other noise that goes on in the hospital.

                  Try to give him good news when you see him. Whether it's that his blood pressure is stable, or his potassium levels are great or whatever you can share with him at the time. He needs to hear some positive things. Don't forget to mention all the wonderful research going on that you've read about here.

                  I hope your son's health improves and he arrives at rehab with a better attitude. He'll do so much better if he can look at his accomplishments and the positive things that are going on in his body.

                  I wish you all the best and hope each day is a little easier for all of you!
                  "Our lives begin to end the day
                  we become silent about things that matter."
                  - Martin Luther King Jr

                  Comment


                    #24
                    hi bob
                    sorry to hear about your son my brother had his accident march 2004 c6-c7 he was in icu for 4 months what you describe is exactly how my brother was thrashin about trying to pull out his breathing tubes very destressing for him and for the family to watch and not beenin able to do aything for him he went through a very rough time had trake put in which made things a little easier for him but just to give you some hope my brother is living in his own apartment and driving his own car with the help of his personal assitant he is also regain sensation even at this stage we still havent giving up hope because if you lose that there is nothing left you will go through bad times in the next while but stay strong it is very hard to see beyond where you are at the moment but things will get better look after yourself and you and your family are in my prayers

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                      #25
                      Originally posted by IMHopeful
                      .............The trach should make him more comfortable. The only thing I can suggest, and perhaps your already doing this, is to tell him he's doing well and it's important for him to stay calm so his body heals. Is there a particular type of music that he likes to listen to? If so, maybe that would help to calm him. My son is a country music fan and we turned on the country music station on TV. I really think it helped. If nothing else, it helps to detract from all the other noise that goes on in the hospital.

                      Try to give him good news when you see him. Whether it's that his blood pressure is stable, or his potassium levels are great or whatever you can share with him at the time. He needs to hear some positive things. Don't forget to mention all the wonderful research going on that you've read about here.
                      Thanks,
                      He's asked for the TV (we activated it yesterday- he doesn't want a music player, yet.)
                      The positive 'good news' is helpful.
                      I've been telling him every time, that he's doing 'good' that he looks better today, etc.
                      We haven't tried to tell him what the docs have said about permanent paralysis, or anything about research to help in the future
                      (I think its too soon (just 10 days) -- just that he has to get strong,
                      to then go to a rehab hospital to work on getting better.
                      I've mentioned that it'll be hard work, and he has to concentrate on
                      just getting better, fighting the infections and fever, and maybe moving his parts.
                      That's what the rehab will work on, I've told him.
                      (I just hope i'm doing 'right' by him and not creating any problems or confusion for him- I try so hard and worry so much.)
                      Last edited by nide44; 14 Sep 2006, 10:13 AM.
                      Bob B
                      SCI - Parent

                      Comment


                        #26
                        Originally posted by nide44
                        Thanks,
                        He's asked for the TV (we activated it yesterday- he doesn't want a music player, yet.)
                        The positive 'good news' is helpful.
                        I've been telling him every time, that he's doing 'good' that he looks better today, etc.
                        We haven't tried to tell him what the docs have said about permanent paralysis, or anything about research to help in the future
                        (I think its too soon (just 10 days) -- just that he has to get strong,
                        to then go to a rehab hospital to work on getting better.
                        I've mentioned that it'll be hard work, and he has to concentrate on
                        just getting better, fighting the infections and fever, and maybe moving his parts.
                        That's what the rehab will work on, I've told him.
                        (I just hope i'm doing 'right' by him and not creating any problems or confusion for him- I try so hard and worry so much.)
                        You sound like you're doing everything right to me. Try and get some laughter in his room, friends, colleagues, children........whoever might bring some.
                        C5/6 incomplete

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

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                          #27
                          Bob, IMO you are doing exactly right. You are there for him, you are being positive and you are finding out as much as you can about his injury.

                          Comment


                            #28
                            Originally posted by RehabRhino
                            You sound like you're doing everything right to me. Try and get some laughter in his room, friends, colleagues, children........whoever might bring some.
                            Good thought. He was trying to crack a few jokes himself and I've been telling him that he's inherited his ugly face from me, and his big mouth from his mom. He smiled at that one.
                            We've got friends galore lining up to see him every day, and they all are a bit on the 'strange' side - just like us .
                            We'll keep him smiling.
                            Bob B
                            SCI - Parent

                            Comment


                              #29
                              Originally posted by IanTPoulter
                              Bob, IMO you are doing exactly right. You are there for him, you are being positive and you are finding out as much as you can about his injury.
                              Ian.......off topic, sorry but...how is your daughter doing?
                              C5/6 incomplete

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

                              Comment


                                #30
                                Originally posted by RehabRhino
                                Ian.......off topic, sorry but...how is your daughter doing?
                                Shes doing great, thanks mate.
                                Last edited by IanTPoulter; 14 Sep 2006, 10:43 AM.

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