14 replies to this topic

[AuntBird]

My niece's accident happened just two months ago. She is fifteen. I am just trying to find people to help me relate to her. I know I can't fully because I am not going through everything that she is, but I want to be there for her the best I can. She is quadriplegic. She has a C-2 incomplete SCI. She is at the Shepherd Center in Atlanta, Georgia right now. On Saturday I was there and she was focusing really hard and was telling us "I'm going to try to move my right leg, or left foot, or left leg, or right foot," Each thing she said she tried to do and most things she could. When she has spasms she says, "That wasn't me." And when she is doing it she says, "I did that." I believe that she is voluntarily moving because I have witnessed it when she isn't. She also feels hunger, when she has to use the bathroom (and I know she is really feeling it because she tells us when she has to go and then asks us to check her and she went), she feels stomach pain when she is bloated (and you can see her bloating clearly in how large her stomach gets (and she is 92 lb. girl, so she is very small.) She also said she feels pins and needles in her feet. She is able to lightly shrug her shoulders and even though she is on the vent., her body is able to breathe. She just hasn't been weened off of it yet. She is eating from a G tube, but the medical staff has hope that she is going to be eating on her own in the next couple of months. From when this journey first began until now a lot has happened. I know she has a long road ahead of her, but doesn't this all sound very promising? I am 22, only seven years older then her. We are more like sisters. My sister- Kayla's mom- doesn't seem as hopeful as me. I believe that she is going to be okay. I believe that these are all signs of that. I know it won't be overnight, but I can still have hope. Please help shed some light on her situations. Kayla was on the back of an ATV with a 32 year old mother of three that was high on drugs and was going 35-40 mph. Neither of them were wearing helmets. The driver was not injured at all. I appreciate any feedback.

[wheeliebear75]

Well this is sort of "tricky"; yes it is good to not "give up" just yet.....HOWEVER it is also VERY important that nobody gives Kayla any false hopes.......I think that would set her back emotionally quite a ways if she got her hopes up too high. Yes if she is having the sensation of when she has to go or has gone to the restroom this is a good sign. It is possible that she may later be re-evaluated & say she does have some.......but they may or may not take off the "complete" label. On this site along with all the adults who were hurt & would be more than happy to help her there are a few kids/teens on here and/or those who were hurt as kids/teens. A good solid support system is something that is worth all the money in the wold......with you guys helping her & by her side she'll come through a lot better for it. Please keep us informed. And feel free to ask questions; just also be prepared to hear things like "you'll have to wait & see" & keep in mind when you read things about SCI & recovery that no 2 cases (even with the same injuries) will have the same outcome so "no 2 patients heal exactly alike even with the exact same injury".

Best of luck to Kayla & the rest of your family.

[AuntBird]

Thank you for the quick reply! I definitely will be sure not to give Kayla false hope. I will help give her confidence and continue to support her through this. It is so strange though the changes I saw this past weekend. She went from "she won't survive the night (the night of the accident, and she was dead at the scene and died once again) to us joking around and laughing this past weekend. I will keep everyone updated! And if anyone is in Charleston, SC, we are having many events for Kayla!

[ZealousMom]

AuntBird, on Jul 21 2009, 04:19 PM, said:

Thank you for the quick reply! I definitely will be sure not to give Kayla false hope. I will help give her confidence and continue to support her through this. It is so strange though the changes I saw this past weekend. She went from "she won't survive the night (the night of the accident, and she was dead at the scene and died once again) to us joking around and laughing this past weekend. I will keep everyone updated! And if anyone is in Charleston, SC, we are having many events for Kayla!

Every time someone told me I would never...I proved them wrong. Sometimes the best help is not believing. She sounds like i determined girl make her prove everyone wrong you never know, just keep in mind that what ever happens don't let her give up just cause she thinks she can't do something there are many, many people out there who do with much less. Everyday is a gift and one more just may make the difference. Good Luck to you both.

[Meadowlarkmark]

Hey, I all for not giving up but the reality of the situation she wil get some back we all do, but she is going to have some major challenges. LIke the others have said, keep up her ( and your) confidence,and remember she is still the same person as she was before the accident. Help her get on with her life--make your life as accessible to her as much as possible.

I twisted over 40 years ago and I still have close family member who have not ramped their homes sort of like they are waiting for me, still, to be healed and walk out of my chair.

[AuntBird]

The night of Kayla's accident we were told that the doctors had seen better cases that didn't survive the night. We were given the time of four hours for her to remain in this world. That night I went and spoke to her. She opened her eyes up and just looked at me. At that moment I knew that she would make it through the night. A couple of weeks before Kay went to the Shepherd Center, the same doctor that told us she was going to die told us that he couldn't believe he was standing there talking to us, talking to Kayla. She has defied odds and continues to do so. That doctor told us that he believes in miracles because what he has seen with Kayla.
Kayla is an extraordinary girl! This past weekend was the best I've seen her since her accident. She was awake all day laughing and joking around with me. We were talking about so many different things and then she showed us how she can move.
I know I need to be realistic, but so far she has done sop many things that people said she wouldn't ever do. She died twice that night, she is here for something.
And whatever the future holds for her I'm going to be there! She is my favorite person, always has been! I will definitly provide the accomadations that she needs in order to come stay with me and visit. That is something that I feel everyone should think of. While I am hoping and giving her confidence for the future, I'm also thinking like this- if she leaves the hospital tomorrow, what will she need? I've been contacting different places to help us with some things for her and we are having many charity events in Charleston for her.
I'll post some great pictures of her soon!

[Yasko]

Always smile in front of her and try to encourage her every day! Every SCI is different and it is going to be a long way for her and her family, but never give up a hope! Wish you guys all the best!

[wheeliebear75]

Meadowlarkmark, on Jul 23 2009, 05:42 PM, said:

Hey, I all for not giving up but the reality of the situation she wil get some back we all do, but she is going to have some major challenges. LIke the others have said, keep up her ( and your) confidence,and remember she is still the same person as she was before the accident. Help her get on with her life--make your life as accessible to her as much as possible.

I twisted over 40 years ago and I still have close family member who have not ramped their homes sort of like they are waiting for me, still, to be healed and walk out of my chair.

That is (hope this don't offend) F'ed up! Um I could see not making changes for a few months.....but sheesh! My sister makes sure she gets a downstairs apt. whenever she can so that I'd be able to stay with her instead of a motel if I came out to AZ for a visit, & the one time she had to take an upstairs apt., (the ONE time she couldn't get a downstairs) she asked the management to let her know as soon as a downstairs was available so she could switch & explained that I use a wheelchair. I hate my sister (not REALLY) but I also love her to death.

[qbounce]

Not to take your neices progress away from her in any way, but some doctors (like the one who gave her 4 hours to live, for instance) are completey at a loss when it comes to SCI.

Be prepared for many more misinformed, or misdiagnosed issues in the future for her, unless they truly deal on a daily basis with this very unique injury. Rediculous comments and illinformed doctors come out of the wood work every where I go now.

The good news with your neice is, she's able to move her lower extremities. At this early stage, that means alot.

Best wishes to her and your family.

[Jax]

qbounce, on Jul 24 2009, 02:33 PM, said:

Not to take your neices progress away from her in any way, but some doctors (like the one who gave her 4 hours to live, for instance) are completey at a loss when it comes to SCI.

Be prepared for many more misinformed, or misdiagnosed issues in the future for her, unless they truly deal on a daily basis with this very unique injury. Rediculous comments and illinformed doctors come out of the wood work every where I go now.

The good news with your neice is, she's able to move her lower extremities. At this early stage, that means alot.

Best wishes to her and your family.

bounce, you got that right. I'm actually rather baffled by the number of uneducated (selfish, egotistical, senseless, uncaring, or just plain stupid...take your pick) people I've met since my injury who have "M.D." attached to their names. I've met quite a few medical professionals (even in rehab centers) who would rather pretend to know what they're doing and collect money from patients (or patients' insurance) rather than refer patients to doctors who can actually help the patients. It's ridiculous!

Auntbird,

One piece of advice I have for anyone with SCI or family members with SCI is to keep all eyes open for the doctors that don't deal with SCI often. Try to find ones that know what they're doing. It's a pretty long process of fighting sometimes to do so, but with your niece being at Shepherd, she has a head start. You have done a good thing in looking here early on. I think you (and your niece) will find lots of helpful information here. Also, I'm glad you are so interested and concerned. Your niece is blessed to have an aunt like you. Your niece sounds like a great kid with a great attitude. Wish you and her the best.

JAX

Edited by Jax, 27 July 2009 - 05:00 AM.

[AuntBird]

Thank you everyone for your replies!

Yes, we have came into contact with so many doctors that we learned have little to no clue about SCIs. We keep telling ourselves as well as the doctors that we know that they have eno magic wand, but Kayla's life is going tot continue too improve. She has a very positive outlook and a lot of people backing her up. Even the "specialists" havve made me very concerned with the doom and gloom they speak of. My mom was with Kay yesterday and when they were transferring gher in thee harness from her bed to her chair my mom said Kayla stuck both her hands outt, and grasped both her fists- as if the brace herself. When Kayla's major movements happened everyone jsut shrugged them off. We tried to tell them that these moveements were voluntary, but no one wowuld listen. Andd I understand why from a medical point of view, but I knwo Kayla better than anyone. Through this and past things in her life I have seen what she is truly made of. And this kid is so tough! However, now they are listening to us and they are going to let Kay go down to the gym so they can get her on some of the machines. I know this is going to be so tiring for her, but I'm really proud of her because she is showing people who doubt her what she is made of.

Jax- thank you for your kind words. I think Kayla and I are really lucky to have eachother, we are best buds.

I hope you all have a great day! And hope for the best with Kayla's swallow test!

[gordonr]

AuntBird, on Jul 21 2009, 09:00 PM, said:

My niece's accident happened just two months ago. ...

Dear Auntie,

As you know I already answered this in the other thread:

http://www.apparelyz...h...60&start=60

post #73 is mine.

(For those who haven't read it, this is a rant about pressure sores which every new sci should be told about. Actually I think they should all be given the rant, then shaken violently and given the rant again, because there is nothing quite as unfortunate as coming out of accute or rehab with fully installed sores.)

Moving on...

The least useful place Kayla can be putting her energy is into the notion of "getting better", if that means getting back normal functions. Unless there is a totally wrong diagnosis, not just about"complete" and "incomplete", but about the basic spinal injury itself, this is never (outside of the most optimistic science scenarios) going to happen.

And the best place she can put her energy is into learning how to live the most satisfying life possible with a maximum use of whatever functions she eventually stabilizes with.

In the end, it doesn't matter whether she uses an electric wheelchair because she has no arm strength, or uses a manual chair because she does, or walks with a stick, or runs at the Olympics. Human happiness is available to any of these cases and people are capable of rendering themselves miserable regardless of favorable circumstances.

That of course, is a trite platitude, which we all have heard and which we all say, "yeah, right..." and inwardly suspect that if WE were rich and healthy and famous and smart, that WE would not be miserable. But the fact is people do not have equal abilities. There is always someone better than you. And the very absolute worst thing you can do to guarantee your unhappiness in life is to believe that you COULD be happy if you were just able to move up one notch on the ability pecking order. This is nonsense. You must be happy exactly where you are, or you will never be happy at all.

I'll give you an example. An example that I found very difficult at the time. This was thirty years agao when I was in rehab. A thoughtful seventeen yearold quad, talking to me about how she was learning to eat with special gloves to grip the utensiles, etc, suddenly teared up and let slip how wonderful she thought it would be if she could be a para. And there was I, a young para who was in fullfledged psychic disorder myself over the fact that I had to get used to being what I am. How strange (and humbling) to see someone who would wish to be in my place!

And yet I can envy her too, because she has functions I do not. One day, as a joke I pinched her toe, in a little friendly flirt, and she said "OW!". I of course just thought she was taking the joke to another level, but in the banter following, I came to understand that she COULD feel her toes, and I think she could even move a couple. Now as anybody on the board here can tell you, it would be VERY nice to have some lowerbody feeling (*Down Dog!*). Some, might even trade a lot of movement for certain sensations down there(*Dog, I am getting the rolled up newspaper!*)

In any case, she had very little in the arms and hands, and has had a thoroughly quaddy life.

But what matters is the KIND of quaddy life.

One day, years latter, I went to the local prosthetics workshop for a new chair prescription, and there was this old friend, working in an administrative capacity, tooling around in an electric chair, opening cabinets, pulling out files, typing into the computer and by God, it suddenly struck me that she was on the upper management end of this operation. Wow. We caught up briefly and she told me that she had gone through college and found this job.

And a few years after that, I saw a human interest bit in the newspaper talking about her and her husband, a guy with some kind of cerebral palsy who is also in a chair, and how they were having their first child.

So here we have a woman, quad incomplete but still heavy quad, who is a wife and mother with her own career.

That is the kind of thing Kayla CAN work on preparing herself for, rather than chasing hopes of cure around the world., or crying in her beer about what might have been.

The point is, happiness and the ability to succeed in our lives is a question of balance. We must be on balance here, where we are. Otherwise, it is like a man running down a tight rope. He might take a few steps, but he WILL fall. On the other hand, someone who can find a balance, here, now--stable in one place-- that person is safe and strong.

Kaya will have ups and downs. This is not a sprint. This is a marathon. Life is long. Life can always get better. Life can always get worse. But try to get this basic idea of balance AS A QUAD, front and center as the long term goal. Becasue that is where the biggest payoff will come.

And in the meantime, even with all the emotional stuff going on DO NOT neglect her body. Go and look at the pressure sore heading in the Health section, and ask yourself what is easier, turning every two hours now (and perhaps fighting with an overworked staff to make that happen) or all the gross care and months in bed you will see described in those threads and also spillling out all over this board.

Kayla cannot "get better" but she can sure as hell avoid getting worse.

Love,

Gordon

[Texas Angel Ang]

I was injured at age 14 and went through a lot of the things you have explained. I won't repeat myself because a lot of people on here already know my story... she sounds like she is very determined... it's always great to have a support system no matter what!

If you have any questions let me know!

[jules]

Just wanted to wish you and kayla all the best, I too was injured at a young age (15). As everyone else has said all you just need to support her and be there when she needs you - and she will.

Jules
xx

[kgriggs75]

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Edited by kgriggs75, 29 July 2009 - 06:25 PM.