Halo Traction and Spinal Fusion

[deb40965]

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]

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]

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]

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]

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]

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]

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]

Geno has a Halo

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]

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]

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]

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]

Thinking of you

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]

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]

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]

Hi Deb,
We're on it!!

-Cara