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Thread: My nephew is a C5 complete and we are terrified!

  1. #1
    Junior Member DNikolai's Avatar
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    My nephew is a C5 complete and we are terrified!


    Hello

    I would appreciate any replies -

    My 23 yr old nephew has a severed SC at the C5 level and quite frankly I am terrified and heartbroken. He was having trouble breathing Saturday - he was injured friday the 16th - so they put him on a ventilator. He had his fusion surgery - from the C2 to the T1 on Monday - they are supposed to do a trach tomorrow. They have found infection in his lungs so they have started anitbiotics. I am so scared. Is this all part of the recovery process? Should be alarmed at the infection and at the troubles breathing? He is also having problems regulating his temperature and also his vitals - BP anf heart rate.
    Someone please help me - let me know if this is what should be expected and when he will possibly be stable.
    Also have any of you done any Hyperbaric Oxgen Therapy? Does it help? I am just absolutely terrified - I dont know any other way to put it. PLEASE HELP US AND PRAY FOR JEREMY!
    Also I would like to say Im sorry for what happened to all of you and your familys. This is an awful AWFUL thing.
    God bless you all.
    We are in Louisville, KY so I feel blessed that we have good hospitals. Has any ever heard of Frazier Rehab?





  2. #2
    Sorry to hear that.I had a lung collapse during surgery.IT took awhile to get off the vent.while in ICU they played music 24/7 which helped.I'll pray for you aned your family.Keep your spirits up.
    Be yourself!!!
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  3. #3
    So sorry you found this site. I know what you are going through..my 11 year old niece Katie was injured a month ago. While I can't offer you advice I just wanted to let you know you've found a terrific site with awesome people.

    My thoughts and prayers are with you, Jeremey and your family.

    ~Caroline

  4. #4
    Senior Member queen's Avatar
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    I am so sorry to hear about your young nephew. I like van damn had only the collapsed lung with mine, but I'm sure others on here have experienced a very similar situation with their injury and will post soon to provide personal information and just know {{{{you and your family}}}} are in many prayers tonight.

    Don't give up hope...

    Queen
    Your life is what you make it, and only you have that choice!

  5. #5
    sorry to hear about Jeremy, but glad you found us so fast. you will get alot of great replies. sadly enough, what he is going through is very typical for SCI.. not everyone goes thru the exact same things, but we all have been thru hell dealing with this..

    are you sure it's severed? in most cases it's not, but possible.. a trach this soon? not sure what the recommended time is, but i was on the vent 12 days, never a trach...

    pneumonia and lung troubles are the norm.. having upper respiratory problems will be a long term concern with SCI.. it's very manageable, but he is still in the early stages.. once he is more stable, things will get alot better..

    concentrate on being there for his parents and hopefully friends are/will be visiting. that was crucial that my friends came to see me in the ICU and hung out when i got stable..

    how did he get injured? i'm a c5/6, complete, just over 3 1/2 yrs.. i promise that things will look up, just hold it together thru this initial, tough time...





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  6. #6
    I too send my condolences your way on the awful news. You may not see a lot of improvements for several weeks to a couple months post SCI. Hang in there for him and everyone else in the circle of family and friends. You never know what positive improvements are around the corner even though things may seem very discouraging now.

    When I was going to rehab, they emphasized two things, 1. Directing your care, & 2. Post SCI education. Knowledge is extremely important of which you will get a lot of here! As far as directing care so that he will make sure everything he needs is taken care of to keep him healthy is also important.

    When I was in rehab I was learning how to take care of myself, but getting the nurses to practice what was being preached to me, was terrible. Some can be pretty worthless, but that's another story and going off-topic here.

    Good luck, there are many people praying for your nephew and loved ones.

  7. #7
    http://sci.rutgers.edu/index.php?pag...3@AcuteSCI.htm

    There's a link above, to an article Dr. Young wrote about new spinal cord iinjuries. It's written for families and will answer a lot of questions. You should print it off for all the family to read.

    I think I've heard Frazier Rehab is good. There is a list of Model SCI centers, get him into one of them.

    Link to list of model SCI rehabs:

    http://www.travisroyfoundation.org/p...-ModelCtrs.htm

    What makes you say his cord is severed? That is very unusual. How was he injured?

    These are dark days for your family. See to it that everybody is fed, watered and rested. This is stressful and you must take care of yourselves.

    Learn all you can. Knowledge is power. You did good finding us this fast. WATCH HIS SKIN! Don't trust the nursing staff to do it. Skin breakdown happens fast and will set him back in rehab. Insurance companies don't give much time in rehab so don't let his skin slow him down. He needs to be turned every 2 hours.

    He's having trouble breathing because part of his diaphragm is paralyzed probably. My injury is c5-6, mine was, but it worked itself out. We (quads) do have compromised respiratory function.

    We do have problems regulating our body temperature, and blood pressure is off in many of us too. The spinal cord controls a lot of stuff. He'll learn to work around it.

    If he's fused from c2 to t1, he busted himself up pretty good. Does he have other injuries also?

    I'm sorry, but I've never heard of hyperbaric oxygen helping.

    We're here for you if we can help. There's a lot of experience here. We've all done it, we've all survived it, and your family will too. It's rough but it will be okay. Not the same, but okay.

    I'm praying for him. Send him our way when he's ready.
    Last edited by betheny; 06-22-2006 at 07:51 PM.

  8. #8
    So sorry to hear about your nephew I will be praying for him
    Be always determined in Life and Love

  9. #9
    My 23 yr old nephew has a severed SC at the C5 level
    This is MOST unusual. How did the accident happen? It is extremely rare that the cord is severed (cut in two). Most often it is crushed or bruised, and there is no way this early to tell how complete the injury will be eventually. Physicians who say otherwise really don't know what they are talking about.

    He was having trouble breathing Saturday - he was injured friday the 16th - so they put him on a ventilator.... they are supposed to do a trach tomorrow.
    This is very common if he actually has a C5 injury. It takes more than 9X the energy to breath for someone with a cervical injury than for an AB. It is common to fatigue and get less and less effective at breathing a few days post injury. This can cause respiratory failure, and adds to the risk for pneumonia, which is also very common. It is likely that he will be able to be weaned from the ventilator but it can be a slow and arduous process at this level of injury. A trach is best if the time on the ventilator is prolonged more than a few days, as an ET tube can cause a lot of damage to the trachea and voice box that is difficult to repair latter. It is more comfortable for the patient too, and reduces the risks for sinus infections.

    They have found infection in his lungs so they have started anitbiotics. I am so scared. Is this all part of the recovery process? Should be alarmed at the infection and at the troubles breathing?
    It is part of the territory. Most people get past this eventually, but lung problems remain a risk for most people with cervical SCI. It is very important that the right antibiotics be used. Also, the right methods need to be used for clearing secretions. This includes "quad" coughing, use of IPPB and a Cough-Assist machine (ideally) plus proper hydration and suctioning. Unfortunately suctioning and a trach also make you make more secretions. Frequent turning and chest PT (percussion) will help loosen the secretions up, but the lack of coughing muscles (primarily abdominals) means that he will need assistance to get the secretions out. Hang in there...this nearly always gets better in a good hospital with good medical and nursing care.

    He is also having problems regulating his temperature and also his vitals - BP anf heart rate.
    Also common. His autonomic nervous system used to communicate with his body through the spinal cord. Now it cannot. With an infection he will run a higher fever than an AB. He will feel cold and hot more easily than you or me. His brain cannot properly speed up his heart rate when metabolic demand is high (fever, low blood oxygen, etc.) and cannot vasoconstrict the blood vessels to keep his blood pressure up normally. Medications can be used to stablize his blood pressure and pulse in the ICU...very rarely is an external or internal pacemaker required although I have seen it needed in a few patients. Because he won't sweat when he has a fever, it is important to dampen his skin with wet washclothes or a spray bottle to help get fever down. Tylenol may help some, and a fan in addition to the water, but a cooling blanket may be needed for high fevers. Watch his skin...the cooling blanket can interfere with the pressure reducing bed features. The low blood pressure also makes him more vulnerable for pressure ulcers.

    Someone please help me - let me know if this is what should be expected and when he will possibly be stable.
    This is all very common. It is difficult to say how long this will take, but it is common to have to be in the ICU and on a ventilator for 2-4 weeks after an injury like this, and the trach may need to stay in place for weeks or even months after getting off the vent. We often admit patients for rehab who still have their trach.

    Also have any of you done any Hyperbaric Oxgen Therapy? Does it help?
    I have seen no good evidence that hyperbaric therapy is of any value in acute spinal cord injury, and as sick as he is, it would be logistically quite difficult, and even dangerous due to problems with use of equipment inside the tank and lack of access to quick emergency response from anyone not already inside the tank with him. We have seen it only helpful in certain types of infections from pressure ulcers and osteomyelitis.

    I am just absolutely terrified - I dont know any other way to put it.
    This is normal. It is a very scary thing...many families say it is the worst thing that ever happened to them as a family. You can survive it though. It is important for family members to be involved, but also to take care of themselves. Take time to sleep and eat properly. Ask friends who offer to help to do something specific that will take a load off of you (mow the lawn, walk the dog, run errands, clean the house or cook, do the laundry, etc.). Don't feel you need to be there 24/7...plan family member shifts and take the time off when someone else can be there.

    Has any ever heard of Frazier Rehab?
    Frazier is one of only two CARF accreditated Spinal Cord Systems of Care in the state of KY. The other is Cardinal Hill in Lexington. If you cannot get him to a Model System SCI Center, this would be the next best. The sooner he gets to rehab the better. It is not too soon to call them and get information about their program and even go over there for a family tour:

    Frazier Rehab Institute
    220 Abraham Flexner Way
    Louisville, KY40202
    Phone:502-582-7490
    Website: http://www.jewishhospital.org/carece...inal/index.asp

    Keep posting here. Feel free to ask questions (no dumb questions, only off-target answers sometimes!!!). So sorry you had to join our little club here, but there are people here who understand. Take advantage of that.

    (KLD)
    Last edited by SCI-Nurse; 06-22-2006 at 09:10 PM.

  10. #10
    I am very sorry to hear about your nephew and feel your frustration and pain. My son was injured last November - 21 years old ,C6. Remember to take care of YOURSELF and remind other family members also-very important at this time. My prayers are with you and your family.

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