So glad I found you guys!

[Elisa]

Yes, Sherie, the halo traction procedure was a complete and utter shock; never crossed my mind for a second that that would be the first step. I'll have to find out more about it but it means he'll have a surgery first to "loosen" up his spine so the traction can stretch it out b/c otherwise weights won't do a thing by themselves. It also means he'll be in the hospital for four weeks, two or more of those weeks confined to a wheelchair, walker or bed with this contraption bolted to his head before he even gets his fusion surgery. Not to mention all that extra expense coming out of Shriners pockets, me not working as well as being away from the rest of the family. Thanks BC, you !@#$%!! My kids were all born in BC, my husband and I have lived and worked there most of our lives and pay plenty of taxes and don't cause them trouble and this is how they repay us. Nice. I hate them more today than I did yesterday.

[hdugger]

I consider what they did to be criminally negligent - they might just as well have stood around and watched as he bled out in a waiting room. It is completely unacceptable that they would force you to wait in such a situation, with no sense of urgency on their part whatsoever.

If you have the energy, you might make that case now while the media is focussed on their hospital. Clearly, they need some education about the priority of kids with rapidly progressing curves, and maybe your effort will protect some other child in the future.

I really believe that your son will come out of this unscathed. Because of their negligence, his surgical prep will be longer than that of other kids. But, once it's all over, like most of the kids I see on this forum, he'll go on with his life and put it all behind him. I think these kinds of things scar the parents much more than they scar the kids. Which is just the way we moms want it

[Elisa]

Totally agree hdhugger and I am in no way going to sit back and be hush hush about this. As mentioned, there is already a woman Amy and her son Donovan that have been very active with the media and hospital authorities and is also going to use my/son story as well. We are keeping in touch for sure. This is all just so wrong in so many ways and it MUST change for the sake of the kids and their families.

On a more positive note, took a taxi to Janzten Beach Mall, got my son the book he wanted, actually he has all the books at home but didn't think we'd need to bring two b/c they're all about 1000 pages but he finished the one already and we need something for him to read on the bus back or he'll go out of his mind with boredom. I also picked up a pack of undies for myself b/c I ran out of clean clothes, lol.

Oh, I bought another bottle of Yellow Tail Shiraz at Target for $5.99!! Man, with the cheap prices of alcohol and no tax down here, I think they'd have to send me to rehab so it's probably a good thing our prices are so much higher up north.

Will be picked up at 2:00 pm to head out for the pulmonary test and the MRI and then back to the hotel to chill out and have dinner with another Canadian woman and her daughter who are also from Vancouver BC. Apparently she has written and published a smaller book about the horrors of BC Children's Hospital as she has spent many years dealing with them but has changed over to Shriner's this past few years. I'll find out more about what her horrors were when we meet later on.

[leahdragonfly]

Hi Elisa,

Glad to hear you made it over to Jantzen Beach and had a little retail therapy.

I've been thinking of Elias and you this afternoon and I hope the MRI went ok. Wishing you a safe trip home. Please update when you can.

Gayle

[Elisa]

It was a long day at the hospital, not Shriners but the regular hospital (sorry I can't remember the acronym b/c my brain is fried) as well as the other Children's hospital (can't remember that one either) where he had the breathing test done and the MRI. My goodness I had no idea an MRI of the spine was so involved and it took a good 2.5 hours of laying completely still. Fortunately I was allowed to give Elias an Ativan which really helped him relax otherwise it would have taken even longer. I got to sit right next to the tech and saw all the pics on the computer as he was taking them and it was very very cool.

My goodness there are so many buildings up on that hill and it was a maze and I must have gotten lost fourteen times. Crazy busy place. I am so glad that MRI is over and very glad to have even gotten one for my son on such short notice b/c obviously they can only take so many patients in a day b/c they take so long.

We did have time between appointments to wander around so we did take the tram down to the water and back up and that was very neat.

Everyone drives SO fast in this city... even the elderly Shriners! I told the taxi driver who brought us back to the hotel to slow down b/c my US medical insurance ran out yesterday and with my luck we'll get into an accident and end up back up on that hill with all those hospitals, lol.

Shriners hospital was so relaxing and laid back compared to the others we were at today and I'm thinking that it will be more to my son's liking (and mine) that he sit around with a halo on his head reading a book, heh.

Back to Canada tomorrow!

[hdugger]

Everyone drives SO fast in this city... even the elderly Shriners!

In the US, Portland is notorious for having slow and courteous drivers. So, just imagine how you'd feel in Boston

Glad he made it through all of the testing, and wishing you a good, quiet trip back home.

[Elisa]

Oh my, I think I'd have heart failure in Boston if that's the case. Really though, with all the fast driving, I never saw a single accident or even heard sirens for that matter. Unlike Campbell River where people seem to bump into each other quite often and the sirens are blasting. I don't know, maybe we're distracted by all the elk crossing the road, haha!

I am wired and won't be able to settle down to sleep for a while yet but Elias is exhausted and just now put down his book to go to sleep. Poor guy had a headache before he had his MRI and I told him I really didn't want to give him anything else b/c I was already planning to give him the Ativan and he spend over two hours in a tube that he said sounded like "construction". He really is an easygoing guy which I am truly thankful for.

I wish I could bring a bunch of this $5.99 wine home with me but that's not possible so I'm enjoying my last little bit here.

Am really missing my kitties and chinchillas and my husband said the "Grey Boys" were really bad last night and he had a heck of a time putting them back b/c as soon as he'd get one back, the other one would run out and played tag team with him. They are very cheeky chinchillas and are totally taking advantage of him, hehe.

[leahdragonfly]

Safe home, Elisa. I am sure those cheeky chinchillas will be happy to see you!

Thinking of you and Elias,




Gayle

[hdugger]

I've never heard of anyone here in the states waiting for surgery unless they're pursuing a highly sought after surgeon.

Brief digression

The equivalent in the US is people who don't have health insurance, like Pilar. Without it, she couldn't have surgery, no matter how bad her curve was.

[JenniferG]

Just had a brief catch up on this thread and want to say how glad I am that at last your son is getting the help he needs. It all sounds so thorough. You are in good hands. Enjoy that last wine, you deserve it.

[Elisa]

We're back in Vancouver! Really nice ride back and spent the whole time chatting with the driver's wife and him and they are super nice people and the drive seemed to go so quickly. Will take an early ferry across tomorrow to the Van Isle and then a two hour drive up to Campbell River. I am really looking forward to seeing all my critters but I'm sure my chinchilla room will resemble one huge cage and I'll have a lot of cleaning and fixing up to do.

Shriners BC/Yukon have a brand new bus and they will be heading back down to Portland in February several times to transport BC kids so perhaps we'll get an appointment with Dr. K at that time? I do think it will be fairly soon as my son is on the "urgent" list.

Oh, that hag that we've been talking to at BC Children's (secretary) who told us that if we choose to go the Shriners route then "there will be no followups with BC" is full of crap. I've recently learned that the Shriners have a four year contract with the government to transport BC kids to Portland and have been given a big grant and a new bus to do so and there is a wonderful facility in Vancouver called Sunnydale (I believe) that children that need follow up care go to. I am going to report that stupid woman.

Everything is working out great so far and I am so glad that we contacted Shriners and am dealing with Portland instead of Vancouver. I am sad that my son did not get treatment earlier on b/c now his situation is much more complicated and what could have been a straightforward procedure so to speak has turned into a much more difficult situation. Oh well, it is what it is and we will move ahead from where we are.

[Pooka1]

Hey Spiny Mouse,

Glad you are heading home. It will be good to be home.

This is fixable.

[Elisa]

Been home for a few hours now and had to get the family all caught up with all the details and visit my kitties. Gotta call my mom next. Haven't been down to see the chins yet b/c it is their sleepy time and I just can't go in the room and wake them all up and then not let them out so I'll be heading down there shortly. I am feeling very very fatigued as of right now and plan on making it an early night.

Man, I could hang out with those Shriners men and wives all day; they're so nice, interesting and very fun. Instead of taking the normal route through Campbell River the driver took a different route so he could see the hotel that I worked at who knows, maybe I can convince them to stay there in the future instead of our competition. I can get them an awesome deal if they do, lol.

Hoping I get a call from Portland this week giving us a date to pack up and head back down there for the actual procedures.

Oh, they were quite upset when I told them that the snit at BC Children's told us that if we went the Shriners route that there would be now followups with BC considering the government has a four-year contract with them to transport kids down south. He asked for her name and the number and I gladly gave it to today's driver and he will be passing the info along to the necessary people. Either that woman is totally misinformed or there is some sort of animosity happening with the staff at BC. I don't know but I wouldn't be surprised at all.

[mariaf]

Man, I could hang out with those Shriners men and wives all day; they're so nice, interesting and very fun.

The first time I met a Shriners was about 7 years ago when my son first began treatment at the Phildelphia Shriners Hospital. Since then I have been blessed to have made many friends among my local Shriners and my family has attended many events including the Children's Holiday party this past December which I helped plan. I was so impressed with them that I became as active as I could in trying to help them with their mission. I have seen firsthand over the years that all these men really want to do in life is to continue to help children.

I could not agree more with your statement above. These folks are what my dad used to call 'the salt of the earth', which loosely translated means 'the best or noblest of their kind'.

Shriners are truly the salt of the earth in my book.

[Elisa]

^^ All very true Maria.