[QuadsDaddy]

Hello all,

I'm new to this site and wanted to say hi and tell you a bit about my story.

On October 20, 2006 my 3 yr old was involved in a head on collision while traveling with his mother. For the last 3 months I have been at BC Childrens hospital in Vancouver helping him to recover. The surgeon told me that my son had an SCI at c6-c7. He said that his spine was pulverized and virtually severed. I was devestated.

My son is in a halo and it should be off very soon. He has a trach and on a ventilator right now, but we expect him to be off of that sooner or later.

There have been days when it's been very tough and others when it's easier. I think the fact that I am a care aide has really helped me to accept it. I have moved here to Vancouver to be with my son until he is well enough to come home. I know it's the best thing for him to have me here.

I'm not really sure what to expect about his ability in the future. Maybe if there are some of you out there with the same level of injury that could give me an idea that would be wonderful.

I know I will be here checking in often.

Glad I found this place.

Thanks.
Jason

[AZ_PTA]

First I want to say my whole heart goes out to you!! Its hard when a family member is involved in an accident and is seriously injuried, but to have one so young!
On to your questions, I think in the long term your son should be able to be pretty independent. Though when I say long term I mean long term... The more he does for him self the better. It will be easy for everyone to fall into doing things for him but he needs to do them too. I'm not saying don't help, I understand he is only three but if you let him learn to depend on others now as he is a new quad he will just cont as he grows. Constantly working with him on his upper extremity strength and conditioning is also a must, he will need it to transfer and to wheel his chair and to funciton with activities of daily living as he grows.

Don't hestiate with any questions, comments or concerns!! That is why Simon created the site, to help!! Come frequently and stay late, Quadsdaddy! All the answers might not be here, but there is certainly a good support group here.

[Glor]

Hi Quadsdaddy,

WELCOME! You have come to the right place, there are so many loving and spirited people on this site..... I just wanted to express how sorry i am....this must be devastating...having a child myself I can only imagine the sadness. I do believe however that all of these difficult experiences are profoundly special and giving as a privelegde to each of us. Your son will be showing you life from a different perspective and moments of happiness you could only have imagined.

Please continue to share with us....
Glor

[icarus_melt76]

At his age, the feeling of depression and the many emotions we have all been through probably won't affect him as much. I'm afraid dad will be shouldering most of the weight for a couple of years. His age adds a completely new dimension to this SCI thing.

Pretty sure there will be quite a few of 'US' feeling awfully guilty about now. I sure do.

Okay dad....you found a great site. People here are well versed in almost every aspect of life as
an SCI (spinal cord injury), and willing to respond day or night. For my two cents worth, I first must admit this situation is extremely hard to address. Being in the health system as an aide will prove to be priceless, both for the personal care and the open-mindedness you display by seeking people like ourselves to help you through the tough times. Have you been introduced to the concept of a social worker for him? They are trained in these areas and can be a private friend as well. There will be times he might feel more comfortable telling them about a particular problem where dad might not be his choice. Down the road a bit, of course.

Instead of us trying to prepare you for all sorts of hypothetical situations....perhaps staying around as 'one of the gang', we would get to know and understand both of you as well as assist you on a more regular basis. There's no easy way through this but things can be dealt with under a softer light. Will P.M.

the very best
Al

[Lucky]

So sorry about your little boy. Sounds like he has a great daddy to help him through life though.

All the best to you both and you're familys.

[Izziwhizzi]

Hi Jason,

Boy what a toughie. As a C6 tetra/quad with a 3 year old little girl, I'm so happy its me and not her.

However I've met several happy para & tetra kids in my time nearly all having interesting & fulfilling lives. Tetra kids on vents do exist. I know you are in Canada but my best initial thought is to be in contact worldwide with a couple of country leading spinal units.

In England the National Spinal Injuries Centre is at Stoke Mandeville, Aylesbury. When I was there once they had a 'kids week' where the kids all came together for a few days to have their annual check ups. It was mayhem! Parents were able to meet up and chat - this always helps.

Perhaps they (or a unit similar in Canada or the US who by a pure percentage must have more SCI kids than the UK) can put you in contact with some other injured kids & their parents. Perhaps Simon could start an area for SCI kids here.

I am sure, purely by your initial post that you will help integrate & educate your son in the world outside & make sure he gets as good a start as possible in his life. As you have done, being with him all the time whilst he is in hospital can be your only answer.

Big hugs to you & all your family at this difficult time!

L xx

[QuadsDaddy]

Hey all,

Today I just had a chat with the orthopedic surgeon. My son's halo is to come off on Wednesday. It will be nice to finally have that off. A couple days ago they took some x-rays and were happy with the results so far. There is a slight possibility that Josh will need further surgery to repair the anterior part of his spine, but the surgeon feels its very unlikely. Josh will have to wear a collar for 6 weeks to help support his neck.

While I was chatting with the surgeon he was watching Josh in his bed and noticed how strong some of his movements were. I know that everyone has different abilities from their level of injury, but the surgeon feels that Josh has better control than what his level of injury would indicate. It was good to hear that today.

We are hopeful that Josh will soon be able to come off the ventilator and being out of the halo should help him do that.

He's been doing quite well for the last couple of weeks. During Christmas time, Josh was unable to keep anything down. It seemed that everytime something went in it came back up. Finally they found out that his stomach was hyper-acidic. He's now on ant-acid meds. Has anyone else experienced anything like that? Since being on the meds Josh has done much better. He can keep food down (if we can get him to eat) and even his lungs are better. It's so much nicer when he feels better. He has much better days emotionally and is quite happy most of the time.

Well that about covers a bit more about he is going through. I'll right more later.

Jason

[lukeee]

Thought you might need some words of inspiration so here goes.

Luke was three and a half when his pushchair argued with a speeding drunk driver who failed to stop at the scene of the accident. That was 30 years ago and in those days there was no such thing as spinal boards, head collars etc and his spinal injury wasn't discovered until about a week or so later when a nurse sat him down wrong on the bed and he didn't say ouch

The doctors then x rayed his back and discovered a complete spinal cord severance at T5. 18 months of rehab in hospital and various medical treatments later (he was the test pilot for many new things!!!) and one new sister later that the hospital prescribed as "Luke wouldn't survive" he went home.

Since then Luke has achieved many things. He was the youngest patient to ever have spinal rods fitted, he's travelled the world both on his own and with others, played numerus sports to very high standards ( table tennis, tennis and basketball), coached many young people here and abroad, drives a sports car and hold down a highly stressful full time job with the ambulance service. (He'd really like to drive with the blue lights but luckily his managers won't let him but it doesn't stop him asking!).

His parents never treated him any differently to his siblings and this has been really important in making him a well rounded person who is able to be independent. Things have changed a great deal in the last thirty years and we hope that your son will continue to make a good recovery. If these words just help a little then we know that you, your son and your family have a bright future in front of them. If you have any specific questions for Luke or his parents who have been through what you are going through and have come out the other end then please contact us and we'd be happy to help in any way we can.

[gsp23]

I just wanted to say welcome and also be sure to treat him no differently then an AB person, help of course when needed but make him do things on his own as he can and keep pushing him to do things that he doesnt think he can do, just like a regular child.

Also, dont avoid the subject of him being a quad and any disabilities either to him or other people such as family or just wondering children that you come across. I had when people have tunnel vision at my boyfriend or whoever I am with and are afraid to look at me.

Last thing I can suggest is that when the doctors/nurses/aides are talking to him, make sure they talk to HIM. They can explain more in depth things to you but it is important that they speak to him directly and allow him to answer questions instead of answering for him. I have seen a lot of this when I talk to a child I see in a wheelchair and the parents answer for the child and you can see the look on the childs face when they know they are capable of answering for themselves.

Specifically when you get a wheelchair for your son, make sure that the wheelchair company talks directly to the child about what is comfortable and make sure they actually get his feedback. I realize he is only 3 but obviously still knows what is comfortable or uncomfortable and just keep independance in mind when getting the chair.

Please keep comming back here, its a great place to be.