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walid
10-23-2011, 09:29 AM
♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

Greetings from Kelowna, Canada

Here is Debbie mother of Walid who is fifteen and diagnosed with a very serious high thoracic kyphosis. In July of 2009, I took Walid to his pediatrician because his back had started to dramatically curve. A consult was made to a specialist at our province's BC children's hospital, a hospital with a mission to provide expert care. I studied their website and felt instantly relieved that my son would be in their hands. Unfortunately at that time I did not yet understand that their orthopedic deparment was struggling with waitlists for almost everything from consults to diagnostic to surgery.
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Once you hear the words your child "needs a surgery no one wants to do unless absolutetly necessary" your world changes. The added stress of hearing "your child is on a waiting list" is a wicked combination almost too much for a parent to endure but I did with much support from family and friends. When I found out that Walid's surgery promised for this summer was not even in the planning stages I became very scared. Why was my son being neglected by the healthcare system at a time when he needed it most? I started my campaign - no more waiting for walid- mama bear was upset.
http://youtu.be/nBjDBb9vnTQ
The video created by my friend was a great gift. It allowed me to know that Walid's story was being told even when I was sleeping and sleeping was something I was having a hard time doing. But there was endless support and even though it was the worst of times in some ways it was the best. All the love that surrounded Walid I knew all would be well. Shriners contacted me when they heard about Walid's long wait and to make a long story short we are going there Oct. 31/11 to start halo traction for about three months and then surgery to fix walid's back.
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BC children's hospital warned me not to go to Shriner's when they heard that we were going for an initial consult Sept. 12 ... they told us they were the only ones that could operate on Walid's advanced condition and if I wanted best care for Walid I should stay with the BC children's hospital. This made me very confused and worried that I would make the wrong choice for my son. It also made me angry that after leaving my son so long, that his curve even though hard to measure was probably between 125-130 degrees, his anterior rib and sternal anatomy quite deformed and his head dramatically forward shot, the hospital was making me second guess looking at other options. Thank goodness I followed Shriners advice to at least go for an initial consult and then decide. I was so impressed by their care, compassion and their expert medical treatment without waitlists; it was easy to tell BC children's hospital that we were switching to Spokane Shriner's Hospital!!!
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http://www.globaltvbc.com/video/waiting+for+surgery/video.html?v=2083596207&p=142&s=dd#video
So I have filed formal complaints with the hospital and hopefully a review board will ensure that other parents are fully informed about their options in the future so that they make their own choice about waiting or not. When I was told that a waitlist was Walid's only option that was clearly not true; I am struggling that a hospital that states their mission is excellent care for children doesn't automatically refer children to hospitals when they cannont deliver on their mission.
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Now my focus will be on Walid's healing journey and I look forward to sharing it with you knowing that your support will be so helpful. I have been so focused on ending the waiting that I have to shift gears, relax and focus on my son and imaging a future where he will soon be walking tall and strong. Cheers Debbie ♥♥
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Doreen1
10-23-2011, 09:50 AM
So happy you are on this forum, Debbie! What is the measurement of Walid's curve(s)?

Warmly,
Doreen

Pooka1
10-23-2011, 09:54 AM
The other great thing about going to Shriners is that you will get a surgeon who is very experienced in pediatric spine.

If you stayed in BC for the surgery, I believe Spiny Mouse said there are only two pediatric orthopedic surgeons. With only two, maybe neither has much experience in spine since they necessarily have to be generalists.

leahdragonfly
10-23-2011, 10:05 AM
Welcome Debbie! I am glad you're here and that Walid will finally get the help he needs.

We will all be rooting for him and watching for updates.

Take care,

walid
10-23-2011, 10:45 AM
So happy you are on this forum, Debbie! What is the measurement of Walid's curve(s)?

Warmly,
Doreen


The measurement was 110 degrees last summer and since then the surgeon was said it is difficult to measure but estimates are between 125 and 130. Walid also has scoliosis but that is minor compared to the kyphosis. How come you have to wait till 2012 for your surgery?

Elisa
10-23-2011, 10:56 AM
Hi Debbie, I am glad that your account is now working and that was a great intro! Oct. 31st. is just around the corner so you'll have to get your stuff in gear to take down to Spokane. I hear Spokane is a very nice city and I'm sure you'll enjoy hanging out there for a while and checking things out. I loved Portland even though it rained pretty much the whole time so I didn't walk around town much. I did a lot of reading, watched movies with Elias, played around on my laptop, chatted here with forum friends and occupied my time talking to myself on my blog, lol. Mostly I just watched my boy get the care he so desperately needed which was so rewarding.

Doreen has to wait until 2012 for her surgery b/c she is taking medication to first strengthen her bones. She has a blog link in her signature that explains more about her story.

Oh, and welcome fellow BCer!

walid
10-23-2011, 10:58 AM
The other great thing about going to Shriners is that you will get a surgeon who is very experienced in pediatric spine.

If you stayed in BC for the surgery, I believe Spiny Mouse said there are only two pediatric orthopedic surgeons. With only two, maybe neither has much experience in spine sine they necessarily have to be generalists.

The surgeon at Shriner;s Spokane was surprised that another surgeon would say they don't have the expertise that Walid needs. He showed me some examples of other kids that he has operated on with advanced curves ... all from Canada. When all I wanted was a surgical date for my son I was so surprised to hear that immediate surgery would be a mistake and he would probably not achieve much correction. With traction his muscles, joints, bones etc would be more prepared for surgery... this makes so much sense and all I can think about is how how much better Walid's outcome will be with traction first. Thank you Shriner's for investing in my boy. Thank you Sharon for your support!!

Pooka1
10-23-2011, 11:16 AM
I think what you wrote is an example of what I am saying... had you stayed in BC, apparently neither of the two pediatric orthopedic surgeons would have done the traction first and therefore would not have gotten the better outcome. This is why I think there is no way either of those two surgeons could be spine specialists. With two guys serving that many kids, they almost certainly have to be EXTREME generalists.

Looking forward to hearing great reports from you guys!

Doreen1
10-23-2011, 11:23 AM
The measurement was 110 degrees last summer and since then the surgeon was said it is difficult to measure but estimates are between 125 and 130. Walid also has scoliosis but that is minor compared to the kyphosis. How come you have to wait till 2012 for your surgery?

Dr. Lenke's waiting list is long since he only does about 30 adult scoli surgeries per year in addition to pediactric surgeries along with developing new techniques/hardware. He's a very busy man and so worth the wait. I'm on his cancellation list and look forward to receiving a phone call with a new date.

How does Walid feel about going to Shriners on Monday?

Warmly,
Doreen

Elisa
10-23-2011, 11:27 AM
I have nightmares about what would have happened if Elias had in fact got that appointment with BC Children's. I got 'the call' three months after his second surgery/traction and to think of how advanced his curve would have been if left that long and how little they really could have corrected it scares the hell out of me. I'm not good at math but if his curve was 110* in January and when we went back in March to start traction, he had lost another inch in height in those two months so his curve could have been closer to 115*. By July when I got the call it could have been 120* and that would have been our first visit just to be seen. Who knows how long we would have waited for an actual surgery date, yikes! Then there would have been no traction done and merely an attempt to fix the damage as best as they could with a single, no doubt extremely long surgery with more risks and complications. I often quote Garth Brook's song: "Sometimes I thank God for unanswered prayers".

Doreen1
10-23-2011, 11:36 AM
Doreen has to wait until 2012 for her surgery b/c she is taking medication to first strengthen her bones. She has a blog link in her signature that explains more about her story.

Oh, and welcome fellow BCer!

Hi Elisa,
Actually I don't have to wait for surgery because of the Forteo, Aug 1 was the first available slot, crazy, huh? I specifically asked Dr. Lenke if a cancellation opened up, could I take the new slot or still have to wait for the Forteo. Lenke said he will still do surgery even if I get bumped up earlier. That was a big relief for me because this waiting is for the birds.

Thanks so much for sharing Walid's story with the forum a while back.

Warmly,
Doreen

CAmomof2
10-23-2011, 12:20 PM
Welcome Debbie!! So glad to hear that Walid is going to get the care that he deserves. Please keep us updated with his progress. All the best!

titaniumed
10-23-2011, 01:08 PM
Hi Debbie,

Its good to be pointed in the right direction....has there been any plan of attack discussed? Will they do a “snipping” surgery like they did to Elias to loosen things up so the halo traction will be more effective? Will they do an anterior in 3 months after halo? Any discussions on how high they will fuse?

Also, you say that Walid’s curves were discovered in July 2009. What happened, did you just notice the hump all of a sudden? Do you have any pics during that era, or just before? I’m wondering how long it took, how fast the progression was? Did I read that Walid is 15 years old? I noticed my lower left lumbar hump when I was 15. All of a sudden, it was there.....These things happen.

Being an old scoli, I have a million questions and of course its part of me, I guess. I waited 34 years after being a Luque wire candidate back in the 70’s. I waited because I was scared, and waited for technology. When the pedicle screw was introduced, I knew that was the cats meow. Technology has come a long way since I was a kid.

I was never a parent of a child with scoliosis or kyphosis which is probably a good thing. The one thing I can say is that we adapt in time, we become adept at the many different styles of pitches that come across our plate. Walid will become an excellent batter, left or right, it wont matter, he will be able to handle all of it. Show him my x-ray and my skiing video. If he wants to ski, you let me know. Its been a few years since I skied up in BC.
Ed
http://www.youtube.com/watch?v=4tEypv3Vz8o&feature=email

Elisa
10-23-2011, 06:16 PM
I'm curious about all those things too Ed and am looking forward to updates from Debbie when she is able to post them. I've been especially curious about the halo traction b/c unlike Elias who had a posterior release (loosening of spine), halo application and was in traction 24/7, Walid will be in traction for just 12 hours a day. That makes me think he won't have the release surgery but I am totally guessing here. The other halo boy that was there at the same time as Elias did not have release surgery either, just traction and then anterior fusion. Depending on the individual case, what kind of curve they have etc. makes a difference too. Elias' scoliosis was thoracic whereas Ryan's was mostly lumbar.

Doreen, glad for the correction. I think I was mixing up what Lenke advised with that of the other surgeon you spoke with.

walid
10-23-2011, 09:39 PM
... and i love reading all of your comments, we are going to spend our week packing and stuff, have a little going away party on Sat. I will show you guys another picture of his neck from the MRI
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unfortunately when kyphosis gets to 100 degrees and keeps going the curve starts to take on a direction of its own. The last year his sternum has been most grossly affected. I can't imagine what will happen with surgery but I don't know much about the specifics - i haven't seen the surgeon since he has seen the MRI, I wonder if Walid might have another MRI closer to surgery to see what the traction has done. Anyways will know way more when I talk to the surgeon. I have met him once that is it. Putting positive images out there so little walid can walk tall and strong. Just traction no other surgeries is going to get that cord ready for some serious manipulation. They will have to closely monitor his neurological status throughout surgery. The surgeon is hoping that with the traction he will be ensured more correction yeah ... cannot believe that healing is around the corner.

I am not a big planner so hopefully this week is going to get me somewhat organized. I have a list started. Looking at it a little like an adventure. I definitely will miss family and friends but some have already talked about visiting ... there is all this other stuff like skpe, facebook etc.

I really hope a cancellation comes your way Doreen!! August is a long wait!

You know Ed it seemed like over night walid's curve became so obvious and then just kept progressing. I should see if i have pictures when he was younger his scolios had been more of a concern when we first went to the surgeon than his kyphosis. Yes I have that nightmare too sometimes spiny mouse ... could you imagine what our children's surgeries might have been like ata children's ... i mean that is a scary reality and we are not exagerating because we are bitter although i have heard both surgeons are exceptional.

I am overwhelmed by the magnitude of this site and all the info that exists. Thanks for the huge welcome. Next step admit to hospital and surgery next day so halo traction can begin !! Cheers and Love Debbie, Walid's mom

Doreen1
10-24-2011, 07:50 AM
Debbie, do you have other children?

Warmly,
Doreen

mabeckoff
10-24-2011, 08:20 AM
Welcome. I am glad that your son will be getting the help he needs

Elisa
10-24-2011, 11:00 AM
I wish I lived closer so I could come to Walid's party! I'll be thinking of you guys though and post some party pics okay? As far as packing for Walid goes, he'll mostly just need really comfy sleeper pants/sweat pants, underwear, either a pair of slippers with rubber soles or those type of socks that have little rubber thingies on the bottom so he doesn't slip as those floors at Shriners are spit polished, lol. Since Elias was in traction 24/7 I brought him button-up flannel shirts b/c it would have been difficult to pull anything over his head. With Walid only being in traction half time, maybe that won't be an issue. I'd also take along comfortable blankets (I like down b/c they're warm and light) for both of you and favourite pillows too. Not sure if Walid is much of a reader but books are a great idea although Elias did say with the halo on it wasn't as comfortable to read b/c it was a strain on his eyes. I read my books though. Anything that you forget or need can be bought in Spokane.

titaniumed
10-25-2011, 09:40 AM
With planning, you can forget just about everything like myself, and then buy when needed when down in Spokane. Pictures are important, I don’t have many of my back pre-surgery. Once they operate, that’s it.

Linda has a great list on her site just in case you have not seen it.....
http://www.scoliosislinks.com/PreparingforSurgery.htm


Ed

walid
10-26-2011, 07:21 AM
Debbie, do you have other children?

Warmly,
Doreen

Yes Doreen I do ... my daughter is nineteen. She is great, she keeps me grounded. This has been hard on her too, she cries when I mention anything about the surgery but of course never in front of Walid.

walid
10-26-2011, 07:27 AM
Oh yeah slippers ... that is a great list that you passed on Ed. Wow what a great collection of people that really support each other ... i am blessed. And like you say Carol whatever we don't bring we can get in Spokane. Walid is very excited and busy with last days at school, his clubs and of course now the party. I had just put some clothes out for his suitcase and i come home everthing already packed. Everything will be perfect.

Elisa
10-27-2011, 09:32 AM
How are things going with the party prep and other things?

titaniumed
10-29-2011, 02:03 PM
Debbie,

Is it party time? I could use a cocktail right now.

When are you guys off for Spokane?

Ed

Elisa
10-29-2011, 08:30 PM
It is party time Ed but since we both live too far away from Walid, we can have our drinks at our own home. ;-)

http://www.chbcnews.ca/video/shriners+help+kelowna+boy/video.html?v=2161739476#top+stories

walid
11-08-2011, 02:26 AM
Hey, hey... too bad you guys weren't at the party for sure. The last thing I should have been doing is having a house full of guests the day before the trip to Spokane but clearly it was a worthwhile sacrifice for Walid. He was the main attraction and shone with all the attention.

The next day he woke up to tell me "That was the best day ever Mom". I really relaxed as well especially by the end of the night ... sipping wine with my best buds into the wee hours of the morning might not have been the smartest thing to do before a big trip but surrounded by their love and support I just sat back and felt blessed. The morning was a bit of a scramble making sure everything was packed and all the last minute stuff arranged. Thanks again for the great list of things to pack, Ed. I had a bit of a race ahead of me knowing that my car lights were not working (only high beams, yikes, just for emergencies); enjoyed a beautiful drive with fabulous scenery and mister chatter box filling the time with his bazillion questions, we cruised into the hotel parking lot just at dusk.

Next day at Shriner's Spokane was a lot of pre-admit business and Walid ended the day with an invitation to the Halloween party ... what a great welcome ... trick or treating through the whole hospital; everyone dressed in costumes and lots of candies.

This definitely paved the road for the halo surgery the next day. Unfortunately it was a bit of a gong show in the morning when the hotel missed our wake-up call. Luckily my internal alarm clock was working and when I opened my eyes to see the glowing light of 5:31 I shot out of bed and started packing things up including Walid in record time. Me looking like godzilla, we arrived at the hospital just before six. Walid was definitely scared and nervous waiting for surgery but he had developed a trust that Shriner's Spokane really cared for him and he cooperated like never before in a hospital setting - mom was relieved especially with the memory of the need to call code white just weeks earlier when Walid refused to cooperate and drink the sleepy juice before his MRI and had to be held down for a shot that immoblized him in a few minutes.
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I experienced quite the shock when he appeared about an hour later with his halo; not looking very angelic. It actually looks quite barbaric but the difference it has made in Walid's back already is worth it (he does not agree). His head is not thrust forward as severely and the stooped over stature that I have come to accept in my growing boy has already been altered by the weight of the traction pulling him upwards. Walid is definitely not keen on the whole thing but who would be. The halo is awkard, the weight of the traction takes it toll cauing pain and discomfort, and the liimitations this has put on him are difficult to accept. My focus and concentration is centered around him totally ... listening to him, supporting him, finding as many ways as possible to bring laughter and joy into his day. Started at five pounds and up to twenty-five as of today ... thirty tomorrow.
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What a great hospital and what a caring expert team ... from the housekeepers to the physio, from the volunteers to the surgeon, the nurses the amazing nurses ... everyone is united in their mission to make the hardest times for these kids the best under the circumstances. I am constantly surprised as to how great they truly are!! So we are here for the long haul ... surgery is planned for February. I have some interesting videos posted on Walid's facebook page - no more waiting for walid- but have not been able to download them here. Later this week we will be getting some x-rays. Best news yet is Oma and Opa are planning on coming for a visit!! Thanks for your support ... will keep you posted with his progress. Cheers Debbie
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Doreen1
11-08-2011, 05:55 AM
Morning Debbie!

I've been watching your facebook and love all the pix and videos. Thank you for sharing your and Walid's journey with the world. Continued prayers for you both.
:-)

Warmly,
Doreen

leahdragonfly
11-08-2011, 07:35 AM
Hi Debbie,

I have been wondering about Walid and how everything was going. Thanks so much for the updates and photos. Yes, Shriner's is an amazing place, isn't it? I am sure that Walid will become more accustomed to the halo (I am sure it can't be fun but he sure looks likes he's standing up straighter in the photo). When my daughter was in St Louis Shriner's there was at least 5-6 young kids plus one teenage boy in halos, and we would see them attending classroom, in the playroom, etc.

You sound calm and like you're doing a wonderful job being at his side. Please keep the updates and pictures coming. We are all thinking about you both!

walid
11-08-2011, 12:57 PM
Morning Debbie!

I've been watching your facebook and love all the pix and videos. Thank you for sharing your and Walid's journey with the world. Continued prayers for you both.
:-)

Warmly,
Doreen

Thank You Doreen ... the facebook page has been great for Walid. He gets encouragment from the posts and comments. With his developmental delay he he has a hard time accepting what is happening at times. We are sending our love and prayers to you as well ... as you endure your own wait. Any news? Waiting is difficult ... are there things you find help. If there is anything that I can do let me know!! What kind of things do you like to do? Love Debbie.

Elisa
11-08-2011, 01:10 PM
Good to hear that Walid's head is feeling better. Yes, the halo definitely looks barbaric and when I was first told that Elias would have to wear one, I had a total meltdown at the hospital and they called in a therapist for me with a puppet show and all, lol. It is a much gentler way of stretching the spine out than just cranking it though. The traction felt great for Elias b/c he was so twisted up that he was in a lot of pain and the traction along with the spinal release (first surgery) got rid of his back pain but his neck was really sore from all that pulling so he had a fair amount of Valium to relax his muscles. Did Walid ever complain of pain btw?

Edit: Oh, and I can see already that Walid is looking to be more upright.

walid
11-08-2011, 01:33 PM
You just crack me up Elisa ... breakdowns are necessary at times and can be therapeutic ... free puppet show!! Now what does btw stand for ... ie Did Walid complain of pain btw? You are teaching me so much of this computer lingo. He does beg me at times to take him out especially by the end of the day. In talking with the surgeons today they feel some short breaks are vital to ensure that we continue to have walid's cooperation. He is quite a trooper and does find joy in the smallest things. Last night a patient that is going home tomorrow after being here a month came into our room and hung out for awhile. It was so cool how she interacted with Walid and encouraged him. I am meeting some wonderful people. Wow so blessed. Walid is asking for tylenol quite a bit which does not seem like a big deal but Walid never takes anything for pain and so him asking for it indicates it must be uncomfortable. The pin sites look good but one of them is really painful when I clean it. Talk to you soon. Finished your book yet??

Elisa
11-08-2011, 02:20 PM
The puppet show was so weird b/c when the therapist came into the room with the giant girl puppet wearing a halo (didn't notice it right away) I was positive they had the wrong room! I went from sobbing to laughing instantly and I could hardly concentrate on what she was saying b/c I found the whole thing hysterical and the look on Elias' face was priceless.

BTW means 'by the way'.

I was wondering if Walid had back/neck pain at all before the halo application. Elias was in terrible pain before he was scheduled for surgery/traction and he said it felt like a hot knife sticking through his back and it hurt him terribly when he's sneeze or cough. The traction was an instant relief for him b/c it pulled everything up and straightened him out a lot more.

No, haven't finished my book yet, got about forty more pages to go out of 647 pages. In a way I don't want it to end b/c I'm enjoying it so much.

walid
11-08-2011, 02:34 PM
Hi Debbie,

I have been wondering about Walid and how everything was going. Thanks so much for the updates and photos. Yes, Shriner's is an amazing place, isn't it? I am sure that Walid will become more accustomed to the halo (I am sure it can't be fun but he sure looks likes he's standing up straighter in the photo). When my daughter was in St Louis Shriner's there was at least 5-6 young kids plus one teenage boy in halos, and we would see them attending classroom, in the playroom, etc.

You sound calm and like you're doing a wonderful job being at his side. Please keep the updates and pictures coming. We are all thinking about you both!

Thanks Gayle,

You certainly have been through alot of spine stuff. Glad to hear that both you and your daughter have had such recent good outcomes. Thanks for your comments, the knowledge you have is so appreciated ... this is all quite new to me. I am quite overwhelmed by all the posts but it feels so good to know that there is as much information here as I need and want. What is the future for you now ... continued monitoring and check-ups. Do either of you have any limitations now. Blessings to you from Walids' mom, Debbie

rohrer01
11-08-2011, 04:27 PM
Debbie,
I just read through your story. It is incredible that your hospital put him on a waiting list. In the picture of him at the beach, I wondered if he had trouble even breathing! Poor kid. I'm so glad that you guys got to Shriner's when you did. It probably saved his life. You are a very good mother. The way you handled things and going public had to have been difficult in some respects, but it absolutely paid off! Yes, I agree with the others that it was a blessing in disguise that Walid didn't get seen at the BC Children's hospital. I wish Walid, you and your entire family and circle of friends all the best. The picture updates are wonderful, and yes, you can see progress already in this very short period of time. Imagine how tall and handsome your son will be when he's all done (he's a handsome boy already), but to have that fixed, be able to breathe and stand tall without kinking his poor neck. This is just an amazing story. You and Elias' mother I'm sure have a lot to talk about.

Take Care!

jrnyc
11-08-2011, 07:10 PM
i just looked at the video....
if your son's spinal condition does not constitute an emergency, i cannot imagine what would!
i am so glad you took him to Shriners!!

jess

Elisa
11-08-2011, 07:18 PM
i just looked at the video....
if your son's spinal condition does not constitute an emergency, i cannot imagine what would!
i am so glad you took him to Shriners!!

jess
I know! If her son was being put on the back burner and she already had visits with Reilly & the Gang... there was no hope that Elias would have been seen any time soon. So bloody scary. O_o

This is where the Net is imperative.

Pooka1
11-08-2011, 07:45 PM
Puppet show!

Still one of my favorite anecdotes from the forum. :-)

Elisa
11-08-2011, 08:09 PM
I have to agree, it took me from despair to laughter in a few moments. It's not often you can switch like that, and especially in that situation. Still makes me laugh when I think of it; they think of everything.

titaniumed
11-08-2011, 11:06 PM
Debbie

Its great to see that things are rolling along.....and that Walid is adapting to this big change in his life. I can imagine how scary it is for kids his age to have to go through this, and I see that the hospital has things covered quite well in this regard. I think that Walid is not only extremely brave, but also very lucky to have such a fantastic group of people, the people of Shriners.

Make sure you stay strong and try not to worry. It looks like you are handling this pretty well.

It will be amazing to see the 1st set of sagittal x-rays in a comparison view. Of course, all the x-rays through the process will be amazing.

Thx for posting, communication helps us all.
Ed

walid
11-09-2011, 12:39 AM
Cheers Ed :-} It is scary for Walid and that is why my focus remains solely on being there for him in any way that I can.

Puppet show ... I have not had a good belly aching laugh like I did just now reading about your special puppet therapy, Elias. I have this hilarious visual of you having your meltdown and in comes the puppet complete with a halo ... it feels good to laugh to really laugh! I have to be honest I still have some anger towards those I feel are responsible; I dismiss it as toxic to my well-being but evey now and then I cannot deny it and in that moment it is intense. Don't mess with Mama Bear kinda anger.

Thank you everyone for your support and for validating how wrong Walid's treatment in Canada has been. Thank you Jess. Rohrer01, the tragedy is that Elias and Walid are not alone ... there are others but our stories remain easily dismissed by the hospital because no one is investigating this further. How many children and families have actually found refuge at shriner's hospital ... how many kids have had dismal outcomes because their surgeries were done way past the ideal time and how many children are currently being held hostage by the waitlist??.

Today with the traction at thirty pounds Walid's body did some serious protesting and the pain became intolerable. Team decision to back off. Plan for x-rays later this week. Cheers everyone. Sweet dreams.

Pooka1
11-09-2011, 08:56 AM
Debbie I really admire your attitude and your ability to advocate for Walid through it all. He will get through this because of you. Just wanted to say, "good job." :-)

Sharon

walid
11-10-2011, 03:55 PM
Debbie I really admire your attitude and your ability to advocate for Walid through it all. He will get through this because of you. Just wanted to say, "good job." :-)

Sharon

Thanks Sharon.

walid
11-27-2011, 06:46 PM
On Tuesday it will be four weeks living in shriners spokane hospital. Today Walid and I accidently collided - one of Walid's halo screws met directly with my left eye ... little bit of a shiner - a shriner shiner!! Surgeons are pleased with his ability to tolerate the traction ... he has his times of frustration understandably but I have developed all sorts of tricks to keep him busy!! His oma and opa are coming this thursday - best medicine!! I have atttached a little movie to give you a glimpse into our days. Walid is seeing lots of kids pull through their surgeries and sees how quick they are up and about. Definitely good preparation for him of what lies ahead!! Lots of love from Spokane ... Debbie and Walid.

http://youtu.be/9o-4dDyivPE

Doreen1
11-27-2011, 07:01 PM
Hi Debbie!

I was just watching Walid's FB updates yesterday and am amazed how straight he is standing. He's up to 40# now?! Wowza! My surgery date got moved up from Aug to tomorrow! How are you doing in your new "home?" I bet it is a relief when Oma and Opa visit!

Warmly,
Doreen

walid
11-27-2011, 07:16 PM
Hi Debbie!

I was just watching Walid's FB updates yesterday and am amazed how straight he is standing. He's up to 40# now?! Wowza! My surgery date got moved up from Aug to tomorrow! How are you doing in your new "home?" I bet it is a relief when Oma and Opa visit!

Warmly,
Doreen

What tomorrow ... I had no idea ... this is great news ... so very happy for you. I will be sending my love over to St. Louis all day tomorrow ... is there anything I can do for you ... anytime please let me know. Doreen this is so exciting that you don't have to wait any longer. Peace and blessings - love from debbie and walid!!

Pooka1
11-27-2011, 08:10 PM
That's an excellent film Debbie! It looks like you and Walid are handling it very well and even having fun.

Very good Mommy. :-)

rohrer01
11-27-2011, 08:20 PM
On Tuesday it will be four weeks living in shriners spokane hospital. Today Walid and I accidently collided - one of Walid's halo screws met directly with my left eye ... little bit of a shiner - a shriner shiner!! Surgeons are pleased with his ability to tolerate the traction ... he has his times of frustration understandably but I have developed all sorts of tricks to keep him busy!! His oma and opa are coming this thursday - best medicine!! I have atttached a little movie to give you a glimpse into our days. Walid is seeing lots of kids pull through their surgeries and sees how quick they are up and about. Definitely good preparation for him of what lies ahead!! Lots of love from Spokane ... Debbie and Walid.

http://youtu.be/9o-4dDyivPE

That was a really sweet video. Thanks for sharing! Walid looks happy. :-)

titaniumed
11-28-2011, 12:23 AM
Walid is straightening up! I noticed a huge difference in the video. Its amazing.

Keep up the good work!

Thx for posting
Ed

walid
11-28-2011, 04:55 PM
Next week I will be talking to the surgeron about the actual surgery and what the surgical plan is. After perusing this site quite a bit this weekend I am overwhelmed by all the different scenarios when it comes to these spines and amazed at all the different approaches. I also realize that I don't know much about Walid's specifics besides he really needs surgery. Kyphosis is not as common as scoliosis although I have noticed quite a few cases where there is a mix of scoliosis and kyphosis. On the last x-ray I definitely noticed some scoliosis as well ... as the obvious kyphosis. Still have two months of traction to go ... but nothing like being informed and prepared. I am very confident in Walid's surgeon and have heard only glowing reports of what he has done for children, Dr. Bryan Tompkins. Any suggestions about what kinds of questions I should be asking. I noticed alot of your names on many of the posts and must say impressed by your scope of knowledge -titaniumed rohrer01 Pooka1 and of course my Canadian buddy Elias. Thinking of Doreen as she is probably out of her surgery by now ... looking forward to her first posts. Cheers ... Happy Day ... Love from Spokane.

titaniumed
11-28-2011, 10:24 PM
Thx Debbie

I just do this part time, and for a guy who “failed sandbox” in kindergarten, I will try my best. he he

Have they done any other mri’s or x-rays to see how much he has moved in the past 4 weeks? If so, does he use a program to predict the shape of his spine when they start in another 2 months, and come up with a plan of attack? What will his curves be in both planes when he his finished?

Chances are that he will access the front of his spine up high to work on his pedicles, usually they go under the armpit on the side (right side, my guess?) This would be called a thoracotomy. Ask and see if this correct. Will he use spacers? What grafting material will be used? Will ribs be removed? (They do grow back). Its obvious that they will do some re-shaping of the vert, what process will he use? Will he use BMP? (bone morphogenic protein) in specific areas? (T7, T8, T9). Is the integrity of his bone ok?

What will happen to his sternum? Are there any other bone structures that will be altered?

With kypho’s, the neck can be an issue in the sagittal plane. How do you think it will come out? Will you have to go and fuse above T1 into the neck?

Ask about his pain. Ask about how to handle this with Walid. Its going to be painful.....I know you know this, but it needs to be addressed.(deep breaths)

I’m assuming 2 pedicle screws per level like me, but I would ask. And what levels?.....

How many surgeries will it be? If more than one, what will the stage or wait time be?

Will they do a “wake up” test? or soley rely on SSEP’s?

What complications do you expect? and what are the odds?

I think that you should have “several talks” with him....

I hope others chime in, I’m exhausted tonight. I missing something.....

Your doing an excellent job!
Ed

rohrer01
11-29-2011, 03:45 AM
Next week I will be talking to the surgeron about the actual surgery and what the surgical plan is. After perusing this site quite a bit this weekend I am overwhelmed by all the different scenarios when it comes to these spines and amazed at all the different approaches. I also realize that I don't know much about Walid's specifics besides he really needs surgery. Kyphosis is not as common as scoliosis although I have noticed quite a few cases where there is a mix of scoliosis and kyphosis. On the last x-ray I definitely noticed some scoliosis as well ... as the obvious kyphosis. Still have two months of traction to go ... but nothing like being informed and prepared. I am very confident in Walid's surgeon and have heard only glowing reports of what he has done for children, Dr. Bryan Tompkins. Any suggestions about what kinds of questions I should be asking. I noticed alot of your names on many of the posts and must say impressed by your scope of knowledge -titaniumed rohrer01 Pooka1 and of course my Canadian buddy Elias. Thinking of Doreen as she is probably out of her surgery by now ... looking forward to her first posts. Cheers ... Happy Day ... Love from Spokane.

Thanks for the compliment, but I only learned what I know from being on here! LOL Some topics interest me and I look them up. But honestly, I don't know that much about kyphosis. My aunt has a pretty bad kyphosis, but no one has ever addressed it medically. My family says she got if from slouching because she is very tall and thin, like me. They say that she slouched because she didn't want to be taller than the boys and that's what caused it. I know that's just ignorance on their part.

As for what kind of questions to ask, I think TiEd pretty much covered the bases:

* You could ask about blood loss and what methods will they be using for blood conservation. Use of a cell-saver is pretty much standard these days, but there are other techniques that can be employed, such as hemodilution and the use of epogen (a hormone that causes the body to produce more of its own red cells). You can also ask about other issues pertaining to transfusion that you can think of, and what you can be doing now to minimize the need for blood, as it carries its own risks.

* I agree with Ed on asking about procedure and if it is going to be multistaged. If so, how are they going to control Walid's pain in stage one to reduce anxiety about stage two (if it is multi-staged). This is VERY important if, as you said Walid has some special needs. I have a friend whose autistic son has to be sedated for dental work. If Walid is going to have multiple procedures, will they keep him sedated in between?

* Something you've probably already discussed and thought about is how much information and mental preparation do you need to give Walid so that his anxiety level doesn't increase. As his mother, you know best. But the surgeon, who has experience with all kinds of kids, might have some good insight on this, too. This includes preparing him to feel really tall and having a different center of balance.

* Monitering the nerve function was also a good point. You might ask what kind of correction they are looking at (again, I don't know much about how kyphosis affects the spine in terms of spinal cord length and tension on the spine) and how many levels will need to be fused, such as the need for cervical fusion.

* What, if any, other organs are involved and how will that be monitored. Ed mentioned thoracotomy, which, I believe involves the deflation of one lung and probably removal of a rib in order to reach the spine safely. It seems that I've read about other procedures where they go in through the front of the neck. I don't know if that is out-dated or not.

*What other procedures will be done, for example, will they be using cages where his discs are?

* Will he need a body cast or brace afterwards? Not many people do anymore, but some do.

* Will he still be wearing the halo for a time after surgery? I only mention this because I have a step-cousin, that I believe had to wear a halo for a while post surgery as her deformity was also very severe.

* What kind of physical therapy will he be doing?

* What limitations will there be on his activities short and long term?

* How long will he need to be in the hospital post-surgery? Will he need to go to the ICU?

* You could ask about diet, as constipation seems to be a huge problem with post-surgical people.

*You might ask about the risk of nerve bruising and its effects on him and how long do symptoms last IF that occurs.

* Do the surgeons have a plan B? How long will surgery last?

* Is he likely to get a thoracoplasty (a procedure to remove residual rib hump after the spine is straightened)?

That's all I can think of for now. I know some of my questions were redundant as Ed really covered the bases pretty well, He has been through this and I have not. However, I do have friends with special needs kids and things are addressed differently with them. I think much of this is also preparing yourself mentally, which you are doing a great job of, or at least it seems you are. Even if you don't tell Walid all that is going to be done, educating yourself as much as you can (and you are), is a good idea. You are a very pro-active mom. Because of that, Walid is in the best position for a successful recovery. I wish you the very best. If I find out anymore about kyphosis corrective surgeries I will certainly pass on any information that I find with you. Best wishes and (((HUGS))) for both of you!

robinlbe
11-29-2011, 09:07 PM
Debbie, I'm a newbie on here, having just joined last week because of my son's new diagnosis....I'm following your story (or at least *trying* to), just to help educate myself in all areas of this........
I admire you and all you've done for your son. We moms have to pull out all the stops for our kiddos, because if we don't, no one else will. No one else loves our little guys like we do....

anyway, just wanted you and Walid to know that you're both in my thoughts and prayers.....

blessings...robin

walid
11-30-2011, 01:46 AM
Thx Debbie

I just do this part time, and for a guy who “failed sandbox” in kindergarten, I will try my best. he he

Have they done any other mri’s or x-rays to see how much he has moved in the past 4 weeks? If so, does he use a program to predict the shape of his spine when they start in another 2 months, and come up with a plan of attack? What will his curves be in both planes when he his finished?

Chances are that he will access the front of his spine up high to work on his pedicles, usually they go under the armpit on the side (right side, my guess?) This would be called a thoracotomy. Ask and see if this correct. Will he use spacers? What grafting material will be used? Will ribs be removed? (They do grow back). Its obvious that they will do some re-shaping of the vert, what process will he use? Will he use BMP? (bone morphogenic protein) in specific areas? (T7, T8, T9). Is the integrity of his bone ok?

What will happen to his sternum? Are there any other bone structures that will be altered?

With kypho’s, the neck can be an issue in the sagittal plane. How do you think it will come out? Will you have to go and fuse above T1 into the neck?

Ask about his pain. Ask about how to handle this with Walid. Its going to be painful.....I know you know this, but it needs to be addressed.(deep breaths)

I’m assuming 2 pedicle screws per level like me, but I would ask. And what levels?.....

How many surgeries will it be? If more than one, what will the stage or wait time be?

Will they do a “wake up” test? or soley rely on SSEP’s?

What complications do you expect? and what are the odds?

I think that you should have “several talks” with him....

I hope others chime in, I’m exhausted tonight. I missing something.....

Your doing an excellent job!
Ed

I knew I could count on you Ed ... your information is so helpful ... when I first met the surgeon he talked about the high risk of neurological complications and that his ability to correct the spine needs to be balanced out with that risk. At that time I was simply desperate to find a surgeon to stop the kyphosis ... now of course I dream and imagine that Walid can come out of this with as straight a spine as possible and with the least amount of post-op complications. I also know that the more informed I have the better my dialogue with the surgeon and you have certainly made this possible. What is a SSEP? They did do one x-ray a week after traction started - the really good thing is I can have ongoing conversations with him as he sees Walid almost every day ... yes he does have days off. He is very approachable and I know he has a big heart for these kids. I was kinda dreading talking about the surgery but now with all your info ... i am actually looking forward to it. I can hardly wait to tell you more!! Thank you Ed so much for all your encouragement you are a very special person ... very special!!

walid
11-30-2011, 02:40 AM
Thanks for the compliment, but I only learned what I know from being on here! LOL Some topics interest me and I look them up. But honestly, I don't know that much about kyphosis. My aunt has a pretty bad kyphosis, but no one has ever addressed it medically. My family says she got if from slouching because she is very tall and thin, like me. They say that she slouched because she didn't want to be taller than the boys and that's what caused it. I know that's just ignorance on their part.

As for what kind of questions to ask, I think TiEd pretty much covered the bases:

* You could ask about blood loss and what methods will they be using for blood conservation. Use of a cell-saver is pretty much standard these days, but there are other techniques that can be employed, such as hemodilution and the use of epogen (a hormone that causes the body to produce more of its own red cells). You can also ask about other issues pertaining to transfusion that you can think of, and what you can be doing now to minimize the need for blood, as it carries its own risks.

* I agree with Ed on asking about procedure and if it is going to be multistaged. If so, how are they going to control Walid's pain in stage one to reduce anxiety about stage two (if it is multi-staged). This is VERY important if, as you said Walid has some special needs. I have a friend whose autistic son has to be sedated for dental work. If Walid is going to have multiple procedures, will they keep him sedated in between?

* Something you've probably already discussed and thought about is how much information and mental preparation do you need to give Walid so that his anxiety level doesn't increase. As his mother, you know best. But the surgeon, who has experience with all kinds of kids, might have some good insight on this, too. This includes preparing him to feel really tall and having a different center of balance.

* Monitering the nerve function was also a good point. You might ask what kind of correction they are looking at (again, I don't know much about how kyphosis affects the spine in terms of spinal cord length and tension on the spine) and how many levels will need to be fused, such as the need for cervical fusion.

* What, if any, other organs are involved and how will that be monitored. Ed mentioned thoracotomy, which, I believe involves the deflation of one lung and probably removal of a rib in order to reach the spine safely. It seems that I've read about other procedures where they go in through the front of the neck. I don't know if that is out-dated or not.

*What other procedures will be done, for example, will they be using cages where his discs are?

* Will he need a body cast or brace afterwards? Not many people do anymore, but some do.

* Will he still be wearing the halo for a time after surgery? I only mention this because I have a step-cousin, that I believe had to wear a halo for a while post surgery as her deformity was also very severe.

* What kind of physical therapy will he be doing?

* What limitations will there be on his activities short and long term?

* How long will he need to be in the hospital post-surgery? Will he need to go to the ICU?

* You could ask about diet, as constipation seems to be a huge problem with post-surgical people.

*You might ask about the risk of nerve bruising and its effects on him and how long do symptoms last IF that occurs.

* Do the surgeons have a plan B? How long will surgery last?

* Is he likely to get a thoracoplasty (a procedure to remove residual rib hump after the spine is straightened)?

That's all I can think of for now. I know some of my questions were redundant as Ed really covered the bases pretty well, He has been through this and I have not. However, I do have friends with special needs kids and things are addressed differently with them. I think much of this is also preparing yourself mentally, which you are doing a great job of, or at least it seems you are. Even if you don't tell Walid all that is going to be done, educating yourself as much as you can (and you are), is a good idea. You are a very pro-active mom. Because of that, Walid is in the best position for a successful recovery. I wish you the very best. If I find out anymore about kyphosis corrective surgeries I will certainly pass on any information that I find with you. Best wishes and (((HUGS))) for both of you!

Between you and Ed I am feeling really good about meeting with the surgeon. I know that the more questions I have the more information I will receive. You are right about Walid and his special needs ... he gets very anxious and he perseverates on every detail. Being here in the hospital is giving him alot of exposure to children having surgeries and he is always asking lots of questions ... this is good for him because so much of what he is afraid of is really the unknown. Lots of kids and their families are always telling Walid to remember to listen to the doctors and nurses and not to worry he will get excellent care. Plus Walid is developing alot of trust between all the medical staff and really getting to know them well.

I am going to write out all your questions and sort of group them as much as I can and then just go through them with the surgeon. I am one of those people that forgets all my questions because I get all nervous talking to the surgeon/physician although I have improved a whole lot!! Thanks also for your encouragement and support ... such a source of strength to me and it just shows how the ability to support people can come in many different forms especially with the internet now at our finger tips. Thank you, thank you, Love Debs

rohrer01
11-30-2011, 09:18 AM
Deb,
Here is a pretty good link from a reputable source:
http://emedicine.medscape.com/article/1264959-treatment#showall

I hope you find this helpful. You can look up any unfamiliar terms on the internet. This isn't meant to be scary, as some of the stuff in there might be frightening. I'm not sure what "kind" of kyphosis Walid has, but this covers just about all of it. One thing in particular that I noted is that they do not want to correct the kyphosis to more than 50% due to stretch on the spinal cord. It seemed to also stress the need for blood conservation and preparations for blood loss in advance that include diet, which I'm sure your doctor is well aware of. I didn't find anything about the approach that they are taking with Walid in terms of preoperative traction, so that very well could mean a better correction for him, I don't know.

I looked up "kyphosis surgery" on the search engine. The Mayo website also has some good, but not as extensive, information. It does have a list of questions to ask your doctor that you might find helpful.

I'm pretty sure that titaniumed's comment about SSEP monitoring was a nerve monitoring technique that they currently use to avoid the "wake up" test. With the wake up test, they actually wake the patient up mid-procedure and ask them to wiggle their fingers and toes. When I was a teenager, they were anticipating surgery for me and described this part of the procedure to me. With the new monitoring, the need for this type of neurologic testing has been greatly reduced. Again, I hope you find this useful. Just remember that if your surgeon does things differently it's because he's probably more up-to-date on things. I look forward to hearing what the doctor tells you. Have a wonderful day and take care.

rohrer01

rohrer01
12-08-2011, 04:29 PM
Just thinking about you and Walid and hoping everything is going okay. Best wishes to you both.

titaniumed
01-07-2012, 08:35 PM
Hi Walid and Debbie

I remember a bump up on the surgery date, and wanted to wish a successful surgery.

We are all rooting for you here!

Ed