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

  1. #11
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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

  2. #12
    They put him in a chair??? Whaaaaaaaat??

    How is his spine stabilised? I was in halo traction for 7 weeks. Are you sure they put him in a chair? Can he move his hands or legs?
    C5/6 incomplete

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

  3. #13
    Dear Bob ,

    I am RS from sri lanka. I am soo sorry to hear about your son. My mum was in an accident last November and now she is a complete paraplegic. When you were telling how your son was struggling to breath I remembered the whole incident of my mum. She also was struggling to brath and it was like looking at a dying person . But now she is alright apart from the paralysis, but she has a bed sore, so be very very careful of pressure sores.

    I will pray for you and advice you to stay in touch with carecure as without them I will be nowhere.
    Last edited by Jim; 10-18-2012 at 10:49 AM.

  4. #14
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    Bob,

    Surely they did not put him in a chair. Are you sure????? My injury is T12 and they made me lie flat (two weeks) until they made a special full body brace for me to be up in a chair so that it stablized my back. For a cervical injury, it is hard for me to believe they would put him up in a chair this early after injury.

    I am so sorry for your sons situation. He is very scared. A spinal cord injury definantly teaches patience because we have no other choice but to wait sometimes. I know you are scared too and I dont have any ideas to make that go away. Just be there for your son and participate in his care as much as possible.

    Just keep Hoping for the best. Good luck Bob.....you are seeking answers from a wonderful website.
    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

  5. #15
    They should have a board with letters on that he can use (see link here for a sample) by counting down rows and across to get to the right letters, and a standard "blink once for yes, twice for no" communication system set up for him. Talk to the head nurse or clinical nurse specialist if his staff nurses can't help with this (and if they can't over the weekend, shame on them). http://sci.rutgers.edu/forum/attachm...0&d=1147838142

    It is not unusual for him to be out of bed to a chair this quickly as long as he has had his stabilization surgery (and it sound like he had both posterior and anterior surgery, correct?) and as long as he is wearing the correct neck brace (usually an Aspen or Philadelphia collar). In fact, the sooner he is out of bed, the better. Just be sure he is sitting on an appropriate cushion (a Roho is best at this point) and that his weight is shifted off his bottom (by fully reclining him) for a minute every 15 minutes while sitting.

    He is "vented" now. I think you misunderstood. They want to wait to do a trach (tracheostomy) for 7 days (which is a little long to have an ET tube) because they want to avoid getting infection between it and his anterior neck incision. It is good that he is able to be on just CPAP for a short period. The best way to wean him is to do short frequent periods off the vent, either off completely, or on CPAP, with sufficient rests in between. You may want to print out a copy of the Clinical Practice Guidelines on SCI Respiratory Management in SCI from the Consortium for Spinal Cord Medicine, which you can download here:
    http://www.pva.org/site/PageServer?p...eneralpubs#cpg

    Unfortunately VAP (ventilator associated pneumonia) is very common. Talk to the nurses about how they are implementing the current standards of care for prevention of this condition. This should include having the head of his bed up constantly at 45 degrees to prevent aspiration, and frequent and thorough mouth care (teeth brushing, etc.) which should be as often as every 2 hours. Print this out and take it with you when discussing this with them:
    http://www.ahrq.gov/clinic/ptsafety/chap17a.htm
    http://www.medicalnewstoday.com/medi...p?newsid=38143
    It is also important that quad coughing be part of is lung care regimen. Are they doing this?

    Is he getting tube feedings? He needs proper nourishment. If he is not on tube feedings he needs to be on TPN (complete IV feeding with proteins and fats, not just sugar water). He cannot heal without proper nutrition, and is at more risk for both infections and skin breakdown without it.

    (KLD)
    Last edited by SCI-Nurse; 09-09-2006 at 02:16 PM.

  6. #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.

  7. #17
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    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

  8. #18
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    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

  9. #19
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    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

  10. #20
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    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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