PDA

View Full Version : What is wrong with our Province!? *So Angry!*



Elisa
09-29-2011, 05:33 PM
Here's another teenager from British Columbia who has been made to wait and wait and wait for spine surgery at BC Children's Hospital. This makes me SO angry! I am been in contact with the mom and she and her son are heading down to Spokane Washington on Tuesday for treatment at the Shriners Hospital For Kids down there. Thank God! >_<

I am hoping to keep in touch with her while her son undergoes traction and she will stay with him at the hospital. I think the young man is going to be staying there for three months so not a short stint by any means. My heart goes out to them and I wish them all the best.

http://www.youtube.com/watch?v=nBjDBb9vnTQ&feature=youtu.be

Elisa
09-29-2011, 06:00 PM
Yeah, I'm not a very religious person either Pooka and was using the term loosely. How about "thank Shriners and all the wonderful people who support them!" :-)

Edit: Here's the mom's facebook. Seems like that's the only way to get our kids seen by a specialist in this province. Either that or come on here and beg for help like I did.

http://www.facebook.com/pages/No-More-Waiting-for-Walid/242834155728009

Pooka1
09-29-2011, 06:06 PM
Well I completely agree with that!

The situation with the wait times in Canada is off the hook. These kids have their entire lives ahead of them. These waits might comprise their entire life. It's so scary to contemplate and it makes me mad knowing that earlier action has a great chance of giving these kids their life back.

So glad Walid is going to get help soon. Life is so unfair.

Thanks for posting that, Spiny Mouse. :)

Elisa
09-29-2011, 06:18 PM
Walid's story is churning up my rage and resentment against our health system here in BC and I want to scream and swear and beat the hell out of someone but that won't change anything. Again, another reason why it's probably a good idea that I'm on this island or I'd blow my top and end up in jail or something even though 'they', the ones responsible for this are the criminals not me. Okay, I'm going to settle down now and enjoy my wine and smile that this young man will finally get the care he needs, just like my baby did. Looking through her facebook page I recognize the driver Archer as he's the one who picked us up from the Island and then brought the big bus back on the ferry so Elias could be more comfy in the recliners. I also see that Amy (Donovan's mom) commented on her page as well. Small world. :-)

Pooka1
09-30-2011, 05:34 AM
Who complained about my post such that it was deleted?

Adults afraid of words. Cowards. Isn't it time to grow up and man up?

CAmomof2
09-30-2011, 06:42 AM
Elisa,
I'm so glad that your title says "our province", because we go to the IWK in Halifax, NS and have had wonderful service. Sorry that BC seems to be lacking in this area, it is terrible to have to wait so long!! Just wanted to clarify that every province is not so bad. For example, our daughter was told in July that she would need surgery and she is going to be scheduled for end of Nov or early Dec. Glad your son is doing good now. Hope we can have a happy ending too to this rollercoaster ride!!

JDM555
09-30-2011, 12:25 PM
Who complained about my post such that it was deleted?

Adults afraid of words. Cowards. Isn't it time to grow up and man up?

I had a feeling there was a missing post lol.

Pooka1
09-30-2011, 12:31 PM
I had a feeling there was a missing post lol.

Apparently you can't call counterfactual nonsense counterfactual nonsense.

If something doesn't make sense then it probably isn't true.

On the one hand, we have innocent beautiful children suffering. On the other hand we have ridiculous claims that are inconsistent with the existence of innocent beautiful children suffering.

I don't know how people live with their intellectual DISHONESTY. That would eat me up alive.

Elisa
09-30-2011, 02:41 PM
Walid's mom called me this morning and we had a nice chat. Our stories are so similar even though her son has scoliosis/kyphosis whereas Elias had the severe scoliosis only. I have encouraged her to join here so she can ask questions and get more information and of course to meet others as well. I also asked her if she would start her own blog so we can all follow along with them on their journey. I hope she does! She also knows much more about the 'politics' of BC Children's Hospital b/c she has dealt with them in person as well as she is a nurse who works in the system. I'd love to learn more about all of this b/c I honestly have no idea why they have let our kids' health deteriorate to the point where their lives are in danger. It's criminal!

I asked her why Walid would be doing twelve hours of traction instead of twenty four like Elias did and she said that his surgeon feels that twelve hours a day is all his spine can handle given its severity. Makes sense. I am so pleased to know they are on their way next week to get started on Walid's treatment and I do hope mom does join up here soon.

Elisa
10-01-2011, 11:02 AM
Elisa,
I'm so glad that your title says "our province", because we go to the IWK in Halifax, NS and have had wonderful service. Sorry that BC seems to be lacking in this area, it is terrible to have to wait so long!! Just wanted to clarify that every province is not so bad. For example, our daughter was told in July that she would need surgery and she is going to be scheduled for end of Nov or early Dec. Glad your son is doing good now. Hope we can have a happy ending too to this rollercoaster ride!!

That's great that your daughter received such good and timely care in Nova Scotia. I wish I knew why we are having so much trouble with ridiculous wait lists here in BC. I guess I need to do my own research as well as listen more to political discussions when they're on TV. I do have an interest in this type of thing but I still find it really hard to understand the whole problem. I still don't know WHY we only have two pediatric scoliosis surgeons in the entire province of five million people. What's with that? We are a rich province and the money is apparently there so why can't we bring in a few more surgeons? And why are they spending 93 million dollars on a new hospital... is that really necessary? I wish someone could explain it all to me b/c I am baffled.

Elisa
10-01-2011, 07:54 PM
http://www.globaltvbc.com/video/waiting+for+surgery/video.html?v=2083596207&p=142&s=dd#video

Both Debbie (Walid's mom) and Amy (Donovan's mom) are nurses and live on the mainland and yet they got absolutely nowhere with setting up surgery for their sons. I am not a nurse, so don't work with the medical system, live on an island that is actually not a part of the mainland's system (we have our own: VIHA, Vancouver Island Health Authority) so if these moms had such a long and frustrating struggle with BC Children's Hospital... Elias would have been left and forgotten about I'm afraid. I think about other families who live in much more remote regions of BC and who do not have access to computers or who are not computer savvy and cringe to think how their kids are suffering. See, I really am 'So glad I found you guys!' You have literally saved Elias and I am extremely grateful for all the help you gave me and I hope to be able to return the favour to others.

Pooka1
10-01-2011, 08:16 PM
Spiny Mouse,

Just posting the testimonial about Elias and you has been a great contribution to this forum in my opinion. All testimonials are valuable but yours is especially so since we don't see too many halo traction cases posted.

:)

Elisa
10-05-2011, 06:32 PM
Pooka, I'm glad I could be of some assistance to the forum and do hope others learn something or other from our experience.

I know that Joe O is the one who approves new members but I can't seem to be able to contact him at the moment so just wanted to say that Walid's mom did join this forum and is awaiting approval. I just don't want her to be confused with all the spammers around here lately. I believe her handle is "walid".

CAmomof2
10-07-2011, 12:53 PM
http://www.globaltvbc.com/video/waiting+for+surgery/video.html?v=2083596207&p=142&s=dd#video

Elisa,
I just watched this link from Global TV that you posted - HORRIBLE!!! My heart goes out to them! This is inexcusible! I have heard rumors that BC Children's is getting another Ped. Ortho surgeon right away - looks like it can't come soon enough!!

Elisa
10-07-2011, 01:16 PM
It is horrible and it must be terribly embarrassing for BC Childrens Hospital and our medical system in general. We live in BC... NOT Romania but it feels that way!

I've been keeping in touch with the mom Debbie via emails and she is updating Walid's facebook page daily. She looks so exhausted in the pic she posted this morning. They both have such a loooong journey ahead of them.

http://www.facebook.com/pages/No-More-Waiting-for-Walid/242834155728009

That would be great if another pediatric orthopedic surgeon joined the team (not much of a team imo) to help out but I am sure the problems also have to do with mismanagment of funds etc. At least that is what I am gathering.

Elisa
10-07-2011, 04:57 PM
What also really pisses me off is that our province that is so unequipped to deal with pediatric scoliosis and other bone issues, does not transfer kids to other provinces where they are better equipped to do the surgeries. Not only that, they do NOT suggest Shriners International at all and IF one happens by chance to find out about them like I did from you guys, they tell you that "if you go the Shriners route then there will be no followup here in BC". Yes, they are keeping us hostage while our kids are suffering. This is so wrong in so many ways and how do they get away with it and how do they sleep at night!?

As far as Debbie's interview with Global TV, honestly I could barely watch it through and can't watch it again b/c it reminds me too much of me last fall when I was so worried, helpless and alone and all I did was cry and cry and go to work and cry some more. Maybe these guys just get a kick out of seeing desperate moms cry for their kids. Yeah, that must be it. *rolleyes*

Elias if fifteen now and will be under Shriner's care until he's eighteen. I believe the age for kids to be seen in a children's hospital here is sixteen so he's still got three years of care if need be. So glad.

Elisa
10-08-2011, 05:02 PM
Anyone want to guess the curvature (kyphosis) of this spine? The boy will be in halo traction for three months @ twelve hours a day. I know halo traction worked wonders for my son but he had a lateral curve/rotation and not kyphosis. I don't think I've come across anyone on this forum or the UK forum that had traction for kyphosis. Has anyone else? I can't wait to see exactly what traction will do in this case and how much of a correction he will get when it's all over with.

titaniumed
10-08-2011, 11:45 PM
Woah....Poor kid

125 degrees?
Ed

JDM555
10-09-2011, 12:55 AM
That looks very bad. I'd have to guess anywhere from 115*-125*.

Elisa
10-09-2011, 10:20 AM
She will get the results of the scan next week and hopefully it's all still a go to start the traction asap. Speaking of traction, I'm still wondering about the plan to have her son on traction only twelve hours a day instead of 24/7 like Elias was. I know that every time I transferred the weights from his bed to wheelchair/walker I had to do it gradually and keep tension on the rope otherwise he got an awful feeling like his head was crushing his neck. He said it was hard to describe but couldn't wait for the weights to be back on and he'd give me the evil eye if I was too slow.

This pic was taken from Walid's facebook page and his mom is doing such a great job with updates and pics. I find myself looking there first thing every morning for updates and I sure hope she keeps it up and I think she will; she has a lot to say and a lot going on.

http://www.facebook.com/pages/No-More-Waiting-for-Walid/242834155728009

titaniumed
10-09-2011, 01:46 PM
I have to admit that I just saw this one last night. I don’t read all the threads due to my vision problems.

As alarming as Walid’s MRI’s look now, it would seem that the Canadian doctors would put some sort of priority on a case like this. The fact that Walid has had no x-rays, seems very strange. You would think that the Canadian doctors would at least want to take a peek and see what’s going on. ???

I saw a kyphosis case on the research channel years ago, and this kid about 16 or 17 years old had a sharp paper clip bend, a 180 degree curve, and they fixed him up in Seattle. The surgeons presented his case, and this kid came up to the podium and all that he could say was that “he was in heaven”. It was about the worst case of kyphosis I have ever seen.

They will get Walid fixed up soon, just like Elias.

Ed

Elisa
10-09-2011, 01:59 PM
I too find it odd that he has not had an MRI considering the severity of his kyphosis. I'm almost positive that he was seen by Dr. Riley at BC Children's several times. It's pretty damned obvious to the untrained eye that this kid should be a priority case. At least with Elias, he was never seen by anyone over there and his x-rays got 'lost' so they can always say they didn't know how bad his scoliosis was, blah, blah, but that still doesn't excuse them from being rather rude to me on the phone when I called Riley's office and was told that I could call all I wanted... wouldn't change a thing... he's on the wait list... etc... don't go Shriner's route b/c there will be no followup in BC... more blah, blah and so much precious time wasted! So now I actually don't feel as guilty as I used to b/c I know now that they did nothing for Walid who they actually saw. There was no hope for Elias with them I am convinced.

Edit: 180* kyphosis, yikes! O_O

titaniumed
10-09-2011, 02:47 PM
I didnt know if you were aware of these people.

http://www.ombudsman.bc.ca/


Ed

Elisa
10-09-2011, 03:12 PM
I have heard of them Ed but never thought about them at all when we were getting nowhere with getting Elias seen for his severe scoliosis. I'll keep them in mind though if in the future I am up against a brick wall here in BC. Thanks for the link.

I re-read Debbie's contribution to someone's blog and it is quite interesting and yes her son WAS seen by a pediatric orthopedic specialist. It's unfathomable why the boy was not on the surgical list and according to the hospital spokesperson, there were other 'more urgent' cases. Really? If so, I'm afraid to see what condition these kids are in. Heck, maybe we've got some kids around here with 180* curve or worse!

http://vonhealthandhome.ca/2011/09/21/a-personal-waitlist-story/

Elisa
10-11-2011, 09:03 PM
Walid is still 'waiting' to be approved. They have a lot of questions that I know we can help them with. I've emailed JO twice now but nothing.

titaniumed
10-11-2011, 09:48 PM
The people at Shriners are probably in discussions and are most likely assembling a team of surgeons.....

This is not a simple case.

Ed

Elisa
10-11-2011, 09:52 PM
No doubt Ed. Maybe I didn't make myself clear, Walid's mom has been trying to get on here to ask questions but no one is approving her even though I sent two emails to J.O. asking for her to approved so she can ask things on this forum.

titaniumed
10-11-2011, 10:29 PM
Oh, I didn’t realize.
Ed

Doreen1
10-17-2011, 07:34 AM
Hi Elisa,

I've been checking Walid's facebook page daily and haven't seen any updates. How is Debbie and Walid doing? Do you know if they were able to do the halo yet?

Warmly,
Doreen

Elisa
10-19-2011, 05:08 PM
Doreen, I am waiting for Debbie to get back to me with news but so far nothing yet. She did meet up with some people at BC Children's last Friday for a meeting of 'what went wrong' type thing but I don't know anything more than that. As far as I know Walid is still at home and not in halo traction yet. I hope she contacts me soon b/c I am on the edge of my seat waiting for news.

Doreen1
10-19-2011, 05:43 PM
Did Walid go to Shriners for MRI then went back home?

Warmly,
Doreen

Elisa
10-19-2011, 05:49 PM
Yes, he went to Spokane Washington for an MRI, a breathing test, blood work and to meet with the 'team' who will handle his case. I wish I knew more but unfortunately I have not heard from Debbie in a few days but the last time I talked to her on the phone, she had not heard back from Shriners about the MRI results nor had a date to take Walid back down. I am dying here waiting for updates!

Edit: I also don't know if she's been approved to post on this forum. As soon as I find out anything, I will post.

Doreen1
10-19-2011, 05:53 PM
Edit: I also don't know if she's been approved to post on this forum. As soon as I find out anything, I will post.

Why is it so hard to get approved to post on this forum? I recall waiting days before I got the green light to post.

I was really really hoping Walid would have stayed at Shriners after the MRI to get the halo started. :/

Warmly,
Doreen

Elisa
10-19-2011, 06:20 PM
I think it's so hard to get approved on this forum b/c there is only one person (Joe O'Brien) who can approve new members. She might be approved already and just hasn't posted but I don't know b/c she has not been in touch with me these past few days. I am sure she has a LOT going on the moment and will get back to me as soon as she can. I know when I joined I waited several days to be approved and was desperate to ask questions and eventually had to email Joe myself to ask what was taking so long. He did email me back and told me he was cautious with everyone b/c of spam, which of course we had a big attack of lately.

I think Shriners didn't keep Walid there b/c they need to figure out the results of the MRI and where to go from there. His is a very complex case.

Pooka1
10-19-2011, 06:31 PM
I'm not sure I'd want to be approved for any forum that would have me as a member. :-)

Apologies to Groucho.

Elisa
10-19-2011, 06:49 PM
I'm not sure I'd want to be approved for any forum that would have me as a member. :-)

Apologies to Groucho.
You must be part of the Harley Davidson gang then too eh... Vroooooom!

Elisa
10-20-2011, 03:33 PM
I think they're getting closer to receiving an actual date for Walid to have his halo applied. *fingers crossed it's really soon*

walid
10-22-2011, 10:49 AM
Okay here it goes my first contribution to this forum ... I have been following lots of posts but could never add my two cents. So where to start ... waiting lists and children are a dangerous combination!!!! I can't believe that after over two years someone is finally going to take charge and stop further progression of my son's condition ... finally. Thank you Shriners. You know the worst part of this experience is that when I asked the bc children's hospital if there were other options last summer, 2010, I was told there weren't any but not to worry my son would get the best care at bc children's hospital. This is ethically wrong especially if your mission is to deliver expert care. If they couldn't help Walid and knew someone else could, shame ... where is child-centered care ... too many other agendas. What I would like to find out is what are the waitlists like in other provinces for canadian children??!

Thank you everyone for your support ... I will check out the ombudsman ED - so awesome to feel your love. I know everything is and will be perfect for my son. Thanks to you Carol you have helped me through some times were fear and worry took over - peace and blessings.

Pooka1
10-22-2011, 11:04 AM
Welcome! So glad you are posting.

As for your question about waiting time in other provinces, someone actually spoke to that but I can't remember who. The gist was that one of the eastern provinces, perhaps Ontario, did not seem to have a problem that she saw. But that's just one testimonial.

Good luck with the upcoming procedures. The wait time you have endured is a crime. I am guessing the pediatric orthopedic surgeons must be completely doing emergency surgeries to try to even explain that wait time. If not then I'd like to know who they triage all other patients such that Walid and Elias had to wait so long.

It appears that some surgeons are being rationed so much that the medical system is not able to serve the population. I lived in Calgary AB for three years and knew a doctor who immigrated from South Africa. He was there and ready to provide service but they didn't let him until a slot opened up. He said that is how they keep down costs... by rationing the number of medical professionals.

Doreen1
10-22-2011, 11:36 AM
Okay here it goes my first contribution to this forum ... I have been following lots of posts but could never add my two cents. So where to start ... waiting lists and children are a dangerous combination!!!! I can't believe that after over two years someone is finally going to take charge and stop further progression of my son's condition ... finally. Thank you Shriners. You know the worst part of this experience is that when I asked the bc children's hospital if there were other options last summer, 2010, I was told there weren't any but not to worry my son would get the best care at bc children's hospital. This is ethically wrong especially if your mission is to deliver expert care. If they couldn't help Walid and knew someone else could, shame ... where is child-centered care ... too many other agendas. What I would like to find out is what are the waitlists like in other provinces for canadian children??!

Thank you everyone for your support ... I will check out the ombudsman ED - so awesome to feel your love. I know everything is and will be perfect for my son. Thanks to you Carol you have helped me through some times were fear and worry took over - peace and blessings.

Welcome, Debbie and Walid!

Congratz on the date for admittance to Shriners! How does Walid feel about his big day on Oct 31st? What will the surgeons be doing on day one?

I've been watching your facebook for updates daily, along with my family in Florida. We are all praying for you and Walid to continue to be strong in your journey to help him.

Warmly,
Doreen

Doreen1
10-22-2011, 11:41 AM
I forgot to ask, what did they determine the measurement of Walid's curve?

Warmly,
Doreen

Elisa
10-22-2011, 04:10 PM
Hey Debbie, really good to see you got your account activated and are able to post now. It's a great group we have here and I know you will get lots of information and support. AND I just read that you've got an official date for Walid's halo application on Oct. 31st. So happy for you guys. :-D

Pooka, the poster who was happy with her province's wait time lives in Nova Scotia, not Ontario. Still can't believe the hell I went through with BC Children's and how the receptionist snapped at me when I called and how when I mentioned Shriners she got extra nasty and told me that 'if we went that route then there would be no followup for Elias here in BC'. CRIMINAL!

titaniumed
10-22-2011, 04:10 PM
Very good, welcome Debbie and Walid!

Now that Walid is pointed in the right direction, its probably best not to worry about “why” things like this happen. Governmental policy always has us wondering regardless of which country we are from. Perhaps in the future, after Walid has recovered, a loud noise can be made, “maybe” they will hear it, and “maybe” they will make a decision. Just take a deep breath and focus on what needs to be done with Walid.

I worked with a senior engineer who used to come to my business every now and then. He passed away in March 2009, and after reading his obituary, I noticed that he was running kids down to Shriners in Sacramento from Reno. I always wondered where he was all the time, he was kind of hard to get a hold of if I had a question on a project. He would always say “Ed, you will figure it out”, now I knew why he said this. He was a busy guy. When I was in my recovery, (I was grey, and lost 40#) he asked what happened....why didn’t you have this addressed as a child? I told him that I had elected to wait, I was scared to death. He was speechless after looking at my x-rays. RIP Norm Justice.

When you know that you have no choice, being scared is replaced by bravery. This happens as the days go by leading up to our surgical dates. Its one thing to do this as an adult but the kids are “especially brave” as deformity surgery is an area that they have little knowledge of. They don’t know what questions to ask, and don’t know what to expect. Somehow, the kids pull through. They actually pull through better than the adults. Its instinctual, a life instinct. Like a newly hatched turtle heads for the sea...

Maybe its time to start a new thread, just like Elias’s thread. Keep all Walid’s posts in the same thread.
Ed

Doodles
10-22-2011, 11:44 PM
Debbie and Walid--
I haven't been following things on here as much as I like but know that you've been through quite an ordeal to get the surgery scheduled. Very best of luck to you and hope we all can give you some positive support and information. You've come to the perfect place. Welcome. Janet

JenniferG
10-23-2011, 05:39 AM
Ditto from me. I look forward to reading about another amazing Shriners success. The very best of luck to you both.