PDA

View Full Version : Halo Traction and Spinal Fusion



deb40965
07-01-2009, 07:11 PM
Hi all :)
This is my first time posting here. I found this forum by chance while looking up info on scoliosis and have read through some of the posts and have found some to be very helpful.
My son, Geno is 11 years old, will be 12 on July 22nd and is scheduled for Halo Traction application on July 13th and then Posterior Spinal fusion October 26th. Both will be performed at Shriners Hospital where his father and myself will actually be staying with him in his hospital room through the entire 4 month stay. (including recovery time)
Along with his Scoliosis, he also has Arthrogryposis Multiplex Congenita and is unable to walk. I have not read of anyone else that has gone through these surgeries with Arthrogryposis so far, but I've read that it often helps for patients to get up and walk around, etc... he cannot do that, which of course makes me worry a bit. As far as the Scoliosis is concerned, he has a 130 degree curve and the his fusion will begin at T2 and end at the sacrum.
I guess I am just looking for any feedback from anyone , any advice for the long hospital room stay etc. as well and of course, from all who believe, prayer. :)
Thanks so much in advance.

-Geno's mom

Ballet Mom
07-02-2009, 07:06 PM
Hi Geno's Mom,

I'm sorry I can't help you with your questions as my daughter who has scoliosis has not had surgery. I think it's wonderful that you and your husband are going to be allowed to stay with your son during his entire hospital stay. I think Shriners is an absolutely wonderful organization.

I just wanted to let you know that I started praying for your son yesterday and will continue to do so. Please keep us updated. God bless you and your son.

Lorraine 1966
07-03-2009, 04:04 AM
Hi Deb, when I had my scoliosis operation as you can see, it was 43 years ago, then you were not allowed to get up for 3 months. Not allowed to even sit up, we had to stay in bed the whole time. When I got up I was wobbly, but I was fine. Please dont worry to much Deb, medicine has progressed so much and Shriners is a fine hospital from what I have read on this forum.

I am so sorry your son is so ill, he is in my thoughts, he has a caring loving mother and father that is the main thing. I can remember everyday all I looked forward to, was seeing my mother walk through that door at visiting time.

Will be thinking of you on that day, (which was my mothers birthday) I promise with good positive and loving thoughts, all the very best,

Lorraine.

deb40965
07-08-2009, 02:30 PM
Thanks to both of you for your words of encouragement. Your thoughts and prayers are also very much appreciated. I know I just have to keep my head up, stay as positive as possible and just keep the faith. Just 4 more days till the Halo application. Will try to post before the fusion surgery in October, but even more so afterward ;) Thanks again and God bless

mamamax
07-09-2009, 07:00 AM
Hi Deb ~ count me in amid the thoughts and prayers for Geno. I did come across the following web link which provides a support forum you may find useful. http://www.amcsupport.org/

mariaf
07-09-2009, 07:22 AM
Hi Deb,

I will keep your family in my thoughts and prayers. I know it's hard for a family to spend that much time in a hospital, but I've heard folks say (and found this to be true when I spent a week there for my son's surgery) that Shriners is "almost" like not being in a hospital, if that makes sense. To the extent your son is up to it or can participate, in Philadelphia (where my son had his surgery - and I'm sure it's the same at the other Shriners hospitals), they have things like pet therapy, crafts for the kids, etc. In other words, a lot of non-medical people will come by if your son would like to participate in anything like that. They also have movies/DVD players you can wheel into the room.

Best of luck and post whenever you can.

Ballet Mom
07-13-2009, 04:32 PM
Hi Deb,

I hope Geno's halo application was without problem today. I am continuing to think good things for Geno. Hugs!

Take Care!

deb40965
07-15-2009, 02:06 PM
Hi all, Posting from the Shriners Hospital Parents computer just to let you all know that Genos Halo application Monday went well. What hurt him the most was having the IV put in but he did complain about being uncomfortable in the Halo and it has taken quite a bit of situating teddy bears and pillows and such under his head at night to help him get comfortable for laying on his sides. We are going to Walmart in a bit, and I'm hoping to find one of those "donut pillows" which would work great. Luckily his head was large enough to fit into an adult size halo that has the open back, so laying on his back is much easier. They started him out with 5 pound weights and raised it to 7 today. He is having to spend most of his day in the wheelchair but he got a little bedrest yesterday in the afternoon and is resting now for a bit because he just got his screws tightened about an hour ago and omg.. that was soooo tough.. he was really really upset, crying and just saying Mommy over and over.. It was the toughest thing so far for me. They gave him some tylenol with codiene right before and he is doing much better now that he has calmed down and relaxing a bit. I know alot of it is probably just fear too. The dr. said it will be the last time it has to be done.
So far things are going well though other than the tough stuff. He keeps asking when he can get the halo off and thats hard to handle too since he has soo much longer to go .. and then the bigger surgery.. ugh..:(
But... again, I know we have to be strong and this is all in his best interest. Thank you all so much for your thoughts and prayers; they are truly appreciated.

laurieg6
07-15-2009, 10:19 PM
I hope Geno has a really good outcome. He sounds like such a trooper! I'm sending him all my most positive thoughts and energy.

I hope you're taking care of yourself. When my son was in the hospital, I found that keeping a little notebook of all the important details such as doctors' and nurses' names, meds, dosages, times meds given, etc., was extremely helpful.

All the best,

JenniferG
07-15-2009, 11:45 PM
Oh Deb and Geno! You have such a long, hard road ahead. We will all be wishing you both well and hoping that, down the track, you will both think it was well worth it. Take care of yourself Deb. Is there someone who can take over from you with Geno to give you a break every now and then?

Even if it just gives you something to do/think about, come into the forum regularly and give us updates. All the very best!

Ballet Mom
07-16-2009, 12:18 AM
Hi Deb,

Thanks for popping in. I am so glad Geno's screws don't have to be tightened again. Poor boy. I wish there was something I could do to help other than just good thoughts.

Keep us updated and take care.

nate03
07-16-2009, 07:24 AM
Hi-
You, Geno, and your family are in my thoughts and prayers.

Would receiving some cards cheer him up? If you feel comfortable sharing which Shriners you are at.............if so, please let us know. I know many of us here would like to be able to do something to brighten your days.
Take care,
Cara

mariaf
07-16-2009, 08:41 AM
Great idea, Cara!

Deb - If you think that receiving some cards with well wishes would make your brave little trooper smile, count me in!

Since I would not want you to post your last name here, perhaps we could send cards to Geno, c/o one of the nurses or his doctor or something.

Hang in there - you are a terrific mom!

deb40965
07-16-2009, 09:21 AM
Hi and thanks again for all of your replies. Some cards would be wonderful and I'm sure will brighten his day. He actually has a birthday coming up next week too. ;) I checked with the staff and they said that his first name would be enough so here is the info:

Geno (Inpatient Unit)
Shriners Hospital for Children
1900 Richmond Road
Lexington, Ky 40502

:) deb

nate03
07-16-2009, 10:18 AM
Hi Deb,
We're on it!!

-Cara

nate03
07-22-2009, 11:36 AM
Wishing a Happy Birthday to Geno today!

Thinking of you all,
Cara

tonibunny
07-23-2009, 12:10 AM
Hi Deb, just to let you know I'm thinking of Geno. I had halo traction for a few weeks years ago when I was 10, and I had to have the screws tightened with a spanner every day - it didn't hurt but it upset me a lot so I really do sympathise. Geno sounds very brave, I'll send him a card from London :)

Toni xx

deb40965
07-23-2009, 07:32 PM
Thanks so much for the thoughts and birthday wishes! :) Geno had a real nice birthday here. It was different than if we were at home but it was still nice, many of the staff sang happy birthday to him, decorated his room a bit and the recreation room staff even gave him a birthday present; something he has been wanting.. a telescope! I think we are gonna give it a try tonight.. It was rainy here last night.
Geno is doing really well. They just bumped his weights up to 15 pounds today and it doesn't seem to be bothering him much at all so far. I think staying busy and playing those video games he loves so much is really helping keep his mind off of it. We also talked with the doctor today and she said his x-rays were looking really nice with already about 20 degrees in decrease to his curve... so that would be about 110 as opposed to 130.. yay! Not bad for just 11 days in traction so far. I will try to post a pic or two of him soon so you all can see him.

Thanks again to all of you!
Deb

deb40965
08-14-2009, 02:37 PM
I just wanted to post an update on how Geno has done thus far. ;)
We have been here a month now at Shriners and as I stated before, he came into the hospital with a 130 degree curve.. as of yesterday he is at 92 degrees through Halo Traction! :D
I am so thrilled that he is showing some decrease every week so far and it gives me alot of hope for the outcome after surgery.
We still have 73 days left before surgery.. but who's counting? :p
Also, I don't know if any of you had sent any cards, but if so, unfortunately we didn't get them :eek:, but thank you anyway.
Will try to remember to update again in another month. ;)

Ballet Mom
08-27-2009, 11:22 AM
Hi Deb!

Thrilling news for Geno! I'm so glad to hear he's doing so well. I am still praying hard for him. I'm not on the forum much, but it's nice to hear from you and hear your updates. Time is going by so fast, Geno's surgery will be here before you know it.

Much love to Geno :)

Ballet Mom
10-23-2009, 11:46 AM
Hi Deb,

I don't know if you're still reading these forums, but if you are, good luck with Geno's surgery. It must be coming up very, very soon.

I'm still saying prayers for Geno and you.

May God watch over and protect Geno.