So glad I found you guys!

[Pooka1]

Spiny Mouse,

Deep breaths.

You got your son help.

You have a plan going forward.

You have a great surgeon. These guys are amazing!

Your family will handle this and move past it.

Best regards,
Sharon

[Elisa]

Sharon and Gayle, thanks for the encouragement. I am better now than I was this afternoon when the surgeon dropped the bomb. I went from having no one seeing my son for fifteen months to having been told his case is one of the worst cases ever in a healthy kid and that he needs a first surgery to "loosen" up his spine and have halo traction for two weeks before a spinal fusion can be done b/c his curve is huge and not flexible. If all goes well he will spend four weeks total in the hospital.

I had a complete meltdown b/c even though I knew his back was wonky, I didn't even think of the halo traction possibility and that really freaked me out. They brought in a social worker to the room with a big puppet (with halo attached) and I honestly thought she had the wrong room b/c I was thinking she was there to give some little kid a puppet show. When I realized she was there to help me/my son understand what halo traction was, I did kind of laugh b/c I was sure she had the wrong room and patient. Then they brought in a little boy in a wheelchair who had the halo on and showed us what it looked like and how he could move his head around pretty well and he seemed okay. Neither me nor my son really wanted to see the little boy but in the end his mom along with a nurse brought him in and we talked to him and his mom for a few minutes.

My son is taking it all good actually. He's mostly concerned with having enough books to read while he's in traction as well as was asking if there was a computer he could use and some games etc. The nurse assured him he would not be bored at all. This will be a good time to buy a new laptop for him and he seemed pretty stoked.

I was very angry that my son had to wait this long before being seen by a spine specialist and that something could have been done sooner before it got this bad and I am hating BC Childrens' Hospital right now but am happy we are finally going to move forward. 110 degrees. Wow, just wow!

[Pooka1]

Everyone understands your feelings! Nobody would blame you. You are a wonderful mother.

The point now and always is to move forward. Your son sounds like he is really stepping up to the plate. You must be very proud. He seems like such a great kid.

They can fix this. Things could be worse. Eyes on the prize.

Take your time and be good to yourself.

We are with you.

Sharon

[Pooka1]

ps. Puppet show!

[hdugger]

Elisa,

Your son has a great doctor, a great mom, and a great attitude. Kids manage through these things amazingly well - so much better than we do. I'm sorry that he has to go through it, but I'm certain he'll come out fine on the other side.

If Toni (from the scoliosis support forum) is around, or if you post over there, I'm pretty sure she had halo traction as a kid (as well as all kinds of casting as an infant). She could give a better's kid perspective on it.

Give him a hug for us, and go get yourself some of that good Portland beer.

[Elisa]

Thanks hdhugger. I am feeling a lot better tonight than I did this afternoon; such a big bomb to drop all at once and not being able to go back with the rest of the group was a bit upsetting. I do think it's best to stay and get further testing done now though since we're actually here and that way we won't have to come back down just for that. Dr. K (I'm going to call him that for now b/c I can't remember how to spell his name) is putting my son on the "urgent" list so that's great.

Off topic: Can anyone from the Portland area help me find a bookstore or Target store etc. that carries the Terry Goodkind series? I'd love to pick one up for my son to read as we have one more night here in Portland and then a long drive back and then ferry to Vancouver Island. We're staying at the Portlander Inn but I no clue where anything is or how to get there. Thanks.

[titaniumed]

Elisa

Tough post for me.

Your son is a trooper, always remember that. He is going to pull this off with flying colors, I have no doubt!

I think that Brad(Quickdraw)also along with Tonibunny did halo back in 1983 before Dr Bradford worked on him. He would also be a great person to talk to. He had his surgery when he was about 13 and had a high thoracic 100 degree plus curve. He is in Winnipeg. PM him, tell him Ed say’s hi.

Everything is going to be just fine, and they will fix him up....

Try not to worry too much.... Deep breaths.
Ed

[leahdragonfly]

Hi Elisa,

Powell's Bookstore is absolutely fabulous. I think it is on Burnside. I am not sure where it is in relation to your lodging, but I am sure you could inquire at the lobby desk. There is good free transportation in Portland, the MAX, that goes quite a few places.

I am really glad you are staying over to have the MRI tomorrow. Will they be coming back to pick you up the day after? Will you get to see Dr K again about the MRI result, or speak to him by phone? If his nurse is still Kelly Alexander, she is wonderful and has a can-do attitude. I wouldn't hesitate to ask her anything.

You are doing a wonderful job for your son, and you have a great attitude. You son is very lucky to have you as his mom.

Keep in touch,

Gayle

[Elisa]

Thanks Gayle, I'm handing in there and I too am glad I decided to stay to have the MRI done otherwise I'd either have to come back for it OR get it done in Canada and have the results sent down here. Yeah, sure, I just want to wait for a year or more for that eh!? Yes, Kelly is still Dr. K's assistant and she was very helpful today, everyone was wonderful as promised.

Okay, I'll write down the name of that bookstore and ask the front desk how to get there. We get to sleep in tomorrow for a change and won't be picked up until 2:00 pm for MRI and pulmonary appointments so we do have a bit of time to go book shopping. I've been told that I will be given Kelly's number so I'm thinking I'll be contacting her about the MRI results but honestly I don't know. We will be leaving Portland at 8:00 am Saturday morning to head back home.

[Sherie]

Wow! That's a bombshell. Thank goodness you were able to get to Shriner's, who knows what it would end up being if you had to wait back home. I'm glad your son is getting the care he needs and he's handling it so well (you too),

Just wondering, did the doc venture to say how long the fusion will be? Will he go into the lumbar?

[Elisa]

This is the lady and her son that travelled down to Portland on the bus with us. She started up a facebook page a while back b/c she too was having a helluva time getting anywhere with BC Childrens Hospital. She and her son saw Dr. K as well today and they will be heading back to Shriners within 90 days so her son can have surgery. She has been very vocal with the politicians and media about how awful things have been in BC and her story was on the news (missed it) as well as there were several articles written in the local papers.

http://www.facebook.com/?ref=home#!/...61347427240929

[Elisa]

Sherie, the doctor didn't discuss the details of the fusion, he mostly talked about the halo traction. I'm guessing he's taking it one step at a time or maybe he thinks it's too much information for me to take in right now and he's probably right. His assistant Kelly did draw me a little diagram and she mostly talked about fusing the thoracic region and talked about how that area wouldn't make a whole lot of difference to his flexibility unless he was into gymnastics etc. so again I'm guessing most of the fusion will be up in that area and not so much the lumbar. I'll find out more tomorrow as well as when I talk to her on the phone.

[Elisa]

I found one of the newspaper articles written about Donovan, the teen who travelled down with us yesterday. I was so looking forward to driving back up with them today and exchange our stories but I am still here. Our boys seem to hit it off quite well too and Donovan had read all the books that my son is currently reading. We are definitely going to be keeping in touch with each other and just became friends on facebook. She also asked permission (without names) to use our story as well. I told her sure, and honestly I'm not shy about using our real names when it comes to stuff like this.

http://www.bclocalnews.com/fraser_va...110849754.html

[foofer]

Elisa,

I read your post at work today and struggled with weepiness for the rest of the day- wanted to tell someone but I know they would not have gotten it at all....

In the end, it will all be fine, especially with such great people- you and your son! And probably the rest of your family, as well! I'm so glad that you are at Shriner's and getting the medical attention for your kid that he so deserves. Wow, what a great boy- anyone that just worries that he will not have enough books available- I'm floored.

Take good care of yourself, and your forum friends are here for you always.

[Sherie]

It is a lot to take in, the halo was so unexpected. I suspect they wait until after traction to determine the length of fusion. That would be great if it's only thoracic.

I was very sad to read the article about Donovan. It's not right to make these kids wait for so long. I've never heard of anyone here in the states waiting for surgery unless they're pursuing a highly sought after surgeon. Dr. Lenke apparently has a year or more waiting list, but there are many other surgeons available if you don't want to wait exclusively for him. That's a choice. I'm so glad for you guys there was an alternative.

Take care and hugs to you!