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New Spinal Cord Injury - 19 year old brother

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  • #16
    Hi Nicole,
    I know your brother, you and your family are going through a lot since your brother's injury but at least he's at a very good rehab facility. I was also at Kessler back when I was injured in 95...which was the same time Christopher Reeve was at Kessler after his injury. When I first got to Kessler, I was also on the vent and had setbacks like your brother. I and my family were really worried I'd never get off the vent...thankfully, the doctors and therapists at Kessler (especially Dr. Kirshbloom if he's still there) helped me slowly wean off the vent and eventually get rid of the traque.
    My injury was a little different than your brother's...mine was at c4/5 and was "incomplete", so I can't say how my injury compares to his. Still, your description of his arm movement and breathing trouble sounds similar to mine when I was at Kessler.

    Hang in there and take one day at a time.
    C4/5 incomplete, 17 years since injury

    "The trick is in what one emphasizes. We either make ourselves miserable, or we make ourselves happy. The amount of work is the same.” - Carlos Castaneda

    "We live not alone but chained to a creature of a different kingdom: our body." - Marcel Proust


    • #17
      Originally posted by NicoleW0509 View Post
      Fromnwmont, he is technically at Kessler, which is supposed to be a very good sci rehab, but they transferred him to a regular hospital temporarily due to a spiking fever of which the doctors at Kessler are having a difficult time identifying the cause.

      Yes, UTIs are very common, especially in the beginning. He will improve quickly with antibiotics and they will get him back to rehab.

      Kessler is excellent. He is extremely lucky to be there. Just encourage him like crazy and know that recovery is a long process and he needs to work as hard as possible in rehab and over the next months/years to make the most of it. It is too soon for anyone to know - including the doctors - how much recovery he will have.

      One important thing.... it is very important to learn about how to check skin regularly to avoid developing pressure sores in areas where his sensation is no longer normal. Many people develop these and they can lead to terrible complications and delays in rehab. Make sure the nurses at rehab teach him how to check the vulnerable places, that he does pressure shifts regularly in the wheelchair (every 20 minutes!!) and at night the nurses/aids must turn him every 2 hours to start.

      Good luck to all of you, ask a ton of questions, and never give up hope. I don't believe in false hope.


      • #18
        Even though Jamie is back at the regular hospital for right now, there is some good news! He spent his first night completely off of the vent last night. He has been off of it during the day for over a week, but last night he slept without it for the first time since the night immediately following his accident.


        • #19
          That is VERY good news!


          • #20
            He is going back to Kessler today!


            • #21


              • #22
                Very sorry to hear about your brother's injury. Now that he is back in the rehab at Kessler he can begin the process of learning about spinal cord injury and maximizing his strength and potential. In some ways rehab is like boot camp. It is hard work and you get out of it what you put into it.

                Maybe soon, we will see him here at Care Cure Community, too.

                All the best,


                • #23
                  I have been following this thread since it was started. I am sorry you had to find us but this is such an awesome place for any type of question/concern/life event etc that you may run across. I am so happy to hear that your brother was able to go back to the rehab hospital!! I am hoping too that he has been able to sleep a couple more nights without the vent. Thoughts and prayers for you, your family, and your little brother who is only a year younger then my baby brother so reading your story really hit home for me. I myself am a low para and if anything like what I have had to go through happened to any of my brothers or sister, I would just die. Stay strong!!

                  T8-9 according to latest scoring.......
                  since 1/3/04

                  I am the best at being me. No matter how that happens to be!!


                  • #24
                    He is back at Kessler as of Thursday and is completely done with the vent. He still has the trach indefinitely, but he didn't even need to be coughed at all yesterday using the machine. He discovered that he can pinch his thumb to his index finger on his right hand. Is this considered return? Should he keep practicing that? Also, yesterday, he was trying to move his legs, and I would see his legs move just the slightest bit when he did that. He said that he couldn't tell if he was doing it or if he was trying to move them so hard that he was contracting his lower back muscles, which was causing his legs to have that slight movement. I don't think he could activate any muscles in his lower back before at all. If he were using muscles in his back, is that a slight mobility return?

                    I actually don't know what his exact spinal cord injury level is or if he is considered complete or incomplete. He broke the c3, 4 and 5 vertebrae in the accident, but from what I have been reading, that doesn't necessarily indicate injury level. He can use his shoulders, has flexion and extension at the elbow, and can turn his wrist from side to side but does not have up and
                    down flexion and extension of the wrist. Then there are the two tiny discoveries that maybe don't mean anything that I mentioned earlier - his his thumb moving a tiny bit and possibly activating his lower back muscles (or causing his legs to move...or just causing himself to have spasms )

                    He has sensation basically everywhere, except there are some spots on his abdomen that he cannot feel.

                    How does this all sound? Is there anything promising in here?

                    Thanks for your help!!
                    Last edited by NicoleW0509; 10-07-2012, 10:18 AM. Reason: Add more info!


                    • #25

                      Any movement or sensation is a good thing -- ESPECIALLY below his classified level of injury. While I think there's a specific test to determine complete/incomplete, from a functional standpoint, controllable movement and sensation below his injury level would indicate that he's incomplete, which means greater potential for additional return (certainly when compared to "complete" injuries).

                      God bless!
                      Wheelchair users -- even high-level quads... WANNA BOWL?

                      I'm a C1-2 with a legit 255 high bowling game.


                      • #26
                        Nicole, I am very excited for your brother! I agree with you, your brothers injury seems so similar to my husbands. It's so nice when they are able to be weaned off of the vent! My husband just had his trach removed yesterday. He's always so hesitant to have one of his safety blankets removed.

                        I am in the DC area, we live in northern VA but nowadays i'm spending most of my time IN DC :-) I would love to correspond with you, its so nice to have people to talk to who understand what you're going through. I can't say it enough, but I am so grateful for the care cure and apparelyzed community.


                        • #27
                          An update on Jamie's progress:
                          -He is using a stylus and is able to use his iPhone again, which is definitely improving his happiness level. He has been tweeting, facebooking, texting, and I can call HIS phone instead of my mom's if I want to talk to him. It makes him want to be out of bed and in the chair a lot more; I think just being able to do even that is helping his outlook.

                          -Since last week, he has been using a bike that electrically stimulates his legs to move, and he has been doing very well with it.

                          -He has regained a bit of wrist movement within the last few days.

                          -And, he's still incredibly cute:


                          • #28
                            I think this is great news.
                            Does This Wheelchair Make My Ass Look Fat?


                            • #29
                              Great news on the returning sensation. And great photo


                              • #30
                                Hey everyone!

                                Jamie is coming home from rehab for good one week from today. Originally, he was supposed to be at Kessler until just before Christmas, but I guess with all of the progress he has made, they have decided to send him home almost a month earlier than anticipated. He is so excited about it, but it means that we have a ton of work to do in a short amount of time to have the house ready for his homecoming. Luckily, I am a teacher in a school in DC so I have a week and will be able to be home to help with the transition starting this Saturday.

                                My mom will be his primary caretaker, but unfortunately, this has been quite a rough year for my family. Before my brother's accident, both of my parents had been in and out of the hospital with surgeries of their own. My mom had surgery on her neck at the beginning of the summer, and a few things went wrong with the original operation. Ironically, she came out of surgery in a paralyzed state because a blood clot had developed behind the surgical site. They were able to go back in and fix it, and then two months later, this happened with my brother. In addition to that, there is a screw from the original surgery that was not correctly placed and needs to be fixed. She is scheduled to have that done in January. It is a bit of a blessing in disguise, because she is on long-term disability due to all of this, which means she has been able to not be at work and is able to visit Jamie at Kessler every day. For most of the time he has been in the hospital, she has been in a neck brace just like his. It's funny how the world works.

                                Here are a few updates on his progress:

                                -He is now able to move his ring finger on his right hand.
                                -He is getting more and more independent -- he can feed himself, brush his teeth, and wash his face.
                                -He is now able to go completely upright and put some weight on his legs with the turn table. His therapist says that she never sees people leave her making as much progress as he has on that front.
                                -He went for his post op appointment with the surgeon who did his emergency surgery. The surgeon was shocked and thrilled with his progress. He also told him "there is hope that you will walk again." This was the first time a medical person has come out and said that to him or anyone else in my family.
                                -He is also becoming more realistic with his goals -- at first, he was still in the mindset that he would be able to fully recover and wrestle again in college, then he thought he might be able to walk out of inpatient. He is now thinking "I can't wait until I can use a manual wheelchair." I think this is still optimistic, yet more realistic at just over two months post injury.
                                -On that note, his arms are getting STRONG! He flexed his bicep, and I think it might be back to being bigger than mine, and I am no weakling

                                He is working hard and staying positive. He just finished reading Eric LeGrand's book on his iPad, and I think he has found a lot of inspiration in that.