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  • super sad stepdaughter

    My stepdad got in a wreck on Thanksgiving. He broke C5 and has a hematoma pressing on his spinal cord. He is at Scott and White in Temple, TX. They are doing surgery soon to try and remove the clot. Does that mean that he may regain some movement back? He can move a little bit but it's mostly involuntary movement like when he's being suctioned and stuff. I don't know if he is ASIA A or B or what. He is trached so he can't talk, but they are putting a speaking cannula in when he has visitors and he is still trying to learn how to make sounds. We put it in for a minute today and it was really bothering him so we took it right back out. I just feel so horrible for him because he's really really depressed and scared. His nurse told me today that he will probably never walk again but may have enough movement to use a power chair. I just don't know what to do, I visit him every day but it's very stressful not being able to lipread everything he says. He doesn't want me to leave either so I feel really bad when I do have to leave. I wish I could stay there and keep him company all the time but I can't. I don't even know why I'm writing on here, I guess I just need some comforting from people who know what we are going through. I don't want him to die, and I want him to get his movement back! It's so hard to stay positive when I see him so depressed. I know a lot of people here have been told they would never walk again and they are walking now, but I don't know if he will be that lucky. Does anyone have any suggestions on things I can do or say to make him feel better?

  • #2
    I'm so sorry blake. At this point, just being there is probably helping him a lot. Please keep posting here as this website can provide much support. SCI is hell for everyone involved when it first happens, but you can find at least a little comfort and a lot of knowledge here at CareCure. Stay strong.
    Please donate a dollar a day at http://justadollarplease.org.
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    Thanks!

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    • #3
      Distract him! Movies, favorite magazines, omg anything. I hate hearing that clot has been there all this time. Can you get a board w/ the alphabet on it? W practice he can point w his mouth, I'd think.

      Ask anything, anytime. We've been there.
      Blog:
      Does This Wheelchair Make My Ass Look Fat?

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      • #4
        Thanks. I have already learned a lot here, but theres a lot more to learn I'm sure. I'm his stepdaughter Maegan btw, his name is Blake. I don't know whether to fill out this profile thing as if it's him or me, lol :P

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        • #5
          The reason the clot has been here all this time is because they couldn't get any scans on him in the beginning. He would go into respiratory distress every time they put him in the machine and they would have to pull him out Do you think that since it's been there all this time that it will hinder the chances for him to get better?

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          • #6
            Meagan, Its difficult to establish or determine what movement will return which is directly related to the amount of damage (if any) the spinal cord sustained. I am no expert on the matter but am going through a spinal injury so I have a fair idea. If I may I would like to pray for Blake (and other) so here goes:
            Dear Lord, We bring Blake before you and every single person at the CareCure Forum needing your healing touch - only You know the exact damage/injuries that Blake and all of us have sustained and we, Your children, release of Faith in the mighty name of Jesus Christ commanding our physical bodies to line up with the might word of God and be healed. Lord, we all have our doubts – our faith is not what it should be and this has a huge impact on our trust in what Your word says – Lord, I know you are bigger than any doubt or lack of faith and I ask your to forgive me and other whole feel like this. Lord, You are our God – we love and serve only You, strengthen the family members and loved ones of those injured that they may be courage’s during this difficult time. I/we pray for understanding and your peace during this difficult time – Lord, we also ask that you let this trial pass but more importantly, Your will be done! Lord, we love You and put our requests before You. This we pray in the mighty name of Jesus Christ. Amen

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            • #7
              I think Ima plead ignorance here, b/c ultimately it doesn't matter. It is what it is. I've seen remarkable recoveries, and not so remarkable too.

              Prepare for the most frustrating advice of your life. Then buckle your seatbelt and prepare to hear it 10,000 more times.

              SCI is slowwwwwwwwwww. You'll know the outcome in 2 yrs. Meanwhile, prepare for the worst. You seem to be close w. your stepdad, and he's a lucky dude to have you, b/c the casual ppl drop out in this endurance marathon we call sci.

              Take care of yourself. You can't get sick right now. Start learning, SCI is slow but the learning curve is steep. It takes a lot to keep us alive.

              For now, watch his skin. Make sure they turn him every 2 hrs. In the short term (month or 2) that one thing is the most crucial. Also start asking about sci rehab. Does he have health insurance?

              Good luck, Meaghan. Can you bring your laptop to the hospital and read to Blake from this message board? I think you'll find a lot of help here.

              Originally posted by blake7979 View Post
              The reason the clot has been here all this time is because they couldn't get any scans on him in the beginning. He would go into respiratory distress every time they put him in the machine and they would have to pull him out Do you think that since it's been there all this time that it will hinder the chances for him to get better?
              Blog:
              Does This Wheelchair Make My Ass Look Fat?

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              • #8
                Originally posted by betheny View Post
                For now, watch his skin. Make sure they turn him every 2 hrs. In the short term (month or 2) that one thing is the most crucial. Also start asking about sci rehab. Does he have health insurance?
                Sadly, no, he does not have health insurance. I don't know how he's ever going to be able to have the power chairs and all the equipment he'll need once he gets out of the hospital.

                Also, I had another question... the nurses always talk about "when he gets off the vent" - I know nobody knows for suuuure but do you think, with the level his injury is at, that he will eventually get off it?

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                • #9
                  Meagan, there are many C5's here on this board and I don't know of one of them on a vent, so I would say he has an excellent chance of getting off it.

                  There should be a case worker that is working with you/family to help and try to figure out ways to help, including where to find funding for chairs etc.

                  Sorry you, and by proxy, your stepdad had the need to find us, but there is a wealth of info and experience here.
                  "a T10, who'd Rather be ridin'; than rollin'"

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                  • #10
                    Originally posted by blake7979 View Post
                    Also, I had another question... the nurses always talk about "when he gets off the vent" - I know nobody knows for suuuure but do you think, with the level his injury is at, that he will eventually get off it?
                    He broke C5, so i'm suspecting the blood clot pressuring against his cord was at C5 too? Most people who damage their spinal cord at C5 will get off traction if there is no other health issues, and if the nurses are hinting that he will be,( as there are normally very careful what they say) i would say that he will get off it.

                    I wish i could give you some answer and ease your mind but like Betheny said SCI is a big waiting game, and it's hard to predict what returns he will get. My friend who is a C5 was in traction for a six weeks and was 8-9 weeks before he was able to get out of bed, not saying this will happen because everyone injury is unique.

                    I wish you all the best for your stepfather
                    'Life shrinks or expands in proportion to one's courage" - Anais Nin

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                    • #11
                      What is his actual cord injury level (not fracture)? C4? C5? C6? Each level lower in the cervical cord makes a big difference in outcomes. Can he flex his elbow? Move his shoulders at all?

                      How old is your stepfather? Is he a smoker? Does he have any other health problems? These are major factors in his ability to wean from the ventilator.

                      Was he employed at the time of his accident? Was there another driver at fault in the accident? Have you or anyone else in the family talked with a social worker or case manager about his eligibility for Medicaid, and if so, has an application been made? Is he a military veteran by any chance?

                      He needs to get moved ASAP to a specialty SCI center that can both do his ventilator weaning (it is different for someone with a SCI) and start his rehabilitation program. If he can get into a program in spite of no insurance, then it is likely he would be in rehab 6 weeks or so, so it is not too early to start planning for his ultimate discharge. Temple is about equal distance to both Houston and Dallas, both of which have major SCI centers. He should not just go to a local small rehab unit.

                      Does he live alone? Are there family members who can help with his care? Is his home accessible or can it be made so?

                      (KLD)
                      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                      • #12
                        Originally posted by SCI-Nurse View Post
                        What is his actual cord injury level (not fracture)? C4? C5? C6? Each level lower in the cervical cord makes a big difference in outcomes. Can he flex his elbow? Move his shoulders at all?

                        How old is your stepfather? Is he a smoker? Does he have any other health problems? These are major factors in his ability to wean from the ventilator.

                        Was he employed at the time of his accident? Was there another driver at fault in the accident? Have you or anyone else in the family talked with a social worker or case manager about his eligibility for Medicaid, and if so, has an application been made? Is he a military veteran by any chance?

                        He needs to get moved ASAP to a specialty SCI center that can both do his ventilator weaning (it is different for someone with a SCI) and start his rehabilitation program. If he can get into a program in spite of no insurance, then it is likely he would be in rehab 6 weeks or so, so it is not too early to start planning for his ultimate discharge. Temple is about equal distance to both Houston and Dallas, both of which have major SCI centers. He should not just go to a local small rehab unit.

                        Does he live alone? Are there family members who can help with his care? Is his home accessible or can it be made so?

                        (KLD)
                        I'm not sure what level his spinal cord injury is. I need to ask his doctor about that. He can flex his elbows and shrug his shoulders and he was telling us today that he can feel his feet. He even moved them a little bit.

                        Before the accident he was employed at a distributing company as a salesman. He is 43 years old, drank and smoked occasionally. Or maybe a little more than occasionally but not all the time. He doesn't have any other health problems that I know of, but he has had a hernia several times. It was a one car accident so I don't think anyone else is at fault, but we don't know exactly what happened since he can't remember anything.

                        He's not a veteran and I haven't talked to anyone about Medicaid personally. His dad probably has, but if not, thanks for the suggestions. I will tell his dad to talk to them about getting him financial help and see what happens. Do you think that he will get accepted into a good rehab facility without insurance and no way to make money to pay for it? I don't think his dad would be able to afford to pay for it either.

                        He is having rods put in his neck tomorrow afternoon. How soon after that surgery do you think he should be moved to a good rehab center?

                        Before the accident he was living with his dad (he had financial problems and also is bipolar... long story) and I guess that's where he'll go when he's done with rehab. I really don't know. It should be pretty accessible to him in a power chair, but there may be a small step up in the front door, I can't remember. That could be fixed with a small ramp though. I'm not sure how well his dad would be able to take care of him, so he may need a nurse to come or something. I can take care of him sometimes too, but I'm in school and working so I don't have a whole lot of time.

                        They put the speech cannula in again this morning and he did pretty well with it. The trach nurse said she was working with another patient on one as well and it took him like a week to get to where Blake was this morning. He's been pretty positive this morning that he's going to be ok and he's going to get through this. It's a huge relief to me that he's being more positive!

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                        • #13
                          A lot of good news here, fingers crossed for his surgery!
                          Blog:
                          Does This Wheelchair Make My Ass Look Fat?

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                          • #14
                            Rods should not be put in the neck. Perhaps they are putting in a plate?

                            He should be moved to a SCI rehab program ASAP. There is no reason to delay as long as it is a program that also has an associated acute SCI unit or program that he can go to first.

                            Elbow flexion is C5, so that is a good sign for him to be able to wean from the ventilator. Being a smoker will mean it will take longer and be more difficult. Hope he does not start again...it is a bad habit for anyone, but esp. for someone with a cervical SCI.

                            (KLD)
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                            • #15
                              Medicare/medicaid is available to him, if he's 'old' enough, he/you can apply for medicare, if not, go for medicare disability, he'll likely have medicaid for 2 years, but I'm in Wa & don't know the 'rules' in Tx. Good luck to all of you!!

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