Surgery tomorrow!!

[ScolioGirl]

Hey all,
I'm about 28 hours post-op and doing as well as can be expected. Tomorrow they say I'm going to try sitting up in bed. Right now, I can roll over from side to side but that is about it for movement. This morning I got to start on ice chips and they were about the best things I ever tasted! BUT I have a tube that sucks everything right back out of my mouth, so my throat is still so parched. I hope that I can have that tube out by tomorrow and start drinking clear liquids. (This is from Karin's mom; I'm sitting by her bed on a nice recliner-sleeper they have in the pediatric rooms to type this for Karin. They actually have internet access for each bed in the children's hospital. Karin can't concentrate much more, the morphine pump really zaps her out. It's amazing that after seven hours of surgery and nine hours of being under general anesthetic, that someone can actually be moving around a little bit and interested in the world around them even for a few moments.
Thanks, everyone, for your prayers and support as Karin goes through this experience. We're just thankful that there's something that can be done about the pain to make the future more bright.)

[vandesha]

My daughter is 30 days post op and she is downstairs right now with three of her friends. I wish you the best of luck and god bless.

[KRIS ATKINSON]

Karin's mom, I was in your position 3 months ago, only at Shriners Hospital, where there is a room with a computer with internet connection. My husband is from Erie. We considered Erie Shriners Hospital, but ended up with Greenville Shriners hospital. The though of flying/driving Erica home from Erie to NC made our final decision not to have the surgey where grandma to visit regularly. Instead, we flew grandma down here for a week while Erica was in the first month of recovery. How did you pick the hospital you are at? I assume it is not a Shriners hospital, and not free. I am also surprised Karin is able to communicate with you so well with a tube in her mouth. Erica would have trouble breathing with the tube connected to her lungs for the first day. Maybe Karin's is a different tube. I forget the technical name for the tube. My daughter had anterior, posterior, and thoracoplasty and had to have the chest tube (to keep her lungs clear?). Every time she would try to whisper to us with that tube in her mouth, the machine that apparently records her breathing would make noises, allerting her nurses to tell Erica not to try to talk. We ended up leaving her after just a few minutes that first visit because she was so frustrated trying to tell us what she wanted. Of course, that was right after she woke up from surgery, not the next day. They had the mouth tube removed by the second day post-surgery, so she could talk then. God bless Karin and I'm so glad to get your post!!! Thank you! Kris

[flowerpower]

Thanks for the update on Karin. Glad to hear she is doing so well. Hope her recovery continues as quickly and uncomplicated as possible. God Bless -

Renee

[dancermom]

Thanks for the update on Karin. I know this has to be stressful for you as her mom to watch her go through this. We will be doing the same thing in a little over a month. Surgery lasted 7 hours? Wow. I am glad that everything went well and she is starting to move around and get passed these first couple of days.

-Connie

[ScolioGirl]

(This is Karin's mom for Karin!) Thanks so much for your concern. I read the posts to Karin when she's awake and then she falls back asleep (not surprising when you were in surgery for seven hours and under anesthesia for nine). We're on day four and she's on a plateau right now. She's still got that nose tube in and her throat is so sore, the ice chips (all she's allowed by mouth for now) don't get that far. They really understand that she wants it out and are sympathetic at least (it would be far worse to have the dry heaves with the accompanying back movement if she drank or ate too soon, though, so I'm glad they're cautious about this.) Her pain is manageable thanks to the pain pump. The nurses have been fabulous at the Cleveland Clinic as they roll her every two hours and make sure she's comfortable as she can be. Karin's being very brave; she had her first PT today and she sat up and then stood up! with the therapist hanging on to her while being nauseous. She's braver than I was at that age, for sure. We're hoping to get this tube out by tomorrow (and moving around is supposed to help a lot). The nurse heard stomach sounds today, so that's a good sign. Karin's just so thirsty and wants Gatorade in the worst way. I can tell she must be feeling better because she said she wanted to go home. I'm really, really glad to be at the Cleveland Clinic (we've got good insurance).. I'm a little worried about the nearly two hour ride home, but we've got lots of pillows ready (THANK YOU everyone for the advice). We are so happy with her surgeon, Dr. Kuivila and so is Karin. She feels he actually listens to her and when he's in the room with you, he's 100% there. After seven hours in the OR and talking to us for a long time, he actually took the time to write an entry in Karin's surgery journal. Someone had asked about the hospital we chose: Shriner's would have been very close for us, but they didn't believe her back pain was caused by scoliosis! and none of us could swallow that. I believe in the good work they do, but if we had gone according to their appointment schedule, her curve would have been unmanageable. Dr. Kuivila responded to Karin's pain and curve situation immediately and we felt like we weren't crazy. (Sorry to go on, it's sitting in this hospital room for hours that makes you a little nuts.)

Good luck to those of you with surgery on the horizon; kids are remarkably tenacious and there are wonderful surgeons and nurses out there. Just don't believe the first opinion you get and trust your gut instincts and those of your child. Kris

[billyjoe]

surgery on the horizon

Dear Karin & Kris,
We have this long road ahead of us. We have been watching you go through this since we came on the forum last week and it has helped us so much. You are right, Karin is really brave! Right now we are looking at it through your eyes, knowing that it will be us soon.
Tori is 12 almost 13 and needs to have surgery for her 50T 48L and we are seeking opinions. I (Mom) know what you mean when you say trust your gut instincts and those of your child. It is very important for me to see the opinions and equally as important the approach to the surgery. Only then do we feel that we can make the best decision.
We hope that Karin 's uncomfortability will lift and that each day will be better than the day before. We coincidently are going to Disney tomorrow. (a pre planned vacation) Right in the middle of all of this which is actually a blessing. We will be thinking of scoliogirl and all of you who are going through surgery and we will be making a big wish for your recovery!!!!!
Best to you,
Patricia
(We post as billyjoe as Tori is a big Green Day fan!!!!!)

[flowerpower]

Patricia,

I was wondering if the name (billyjoe) was in reference to Green Day, and I was right! (we are Green Day fans here also) How is your search for a surgeon coming along? Have you found differing opinions on treatment? Hope you have fun at Disney, a perfect distraction from all this!

Renee

[Giggles]

Hope you are well on the road to recovery

Hi there,
I read your post and just wanted to extend my thoughts and prayers to you and your family...My son had surgery Dec 04 - you'll be fine, it takes a little while so be patient with yourself. I hope and pray you are doing okay.
xo
Pat

[billyjoe]

mess-up on the spelling...

Patricia,

I was wondering if the name (billyjoe) was in reference to Green Day, and I was right! (we are Green Day fans here also) How is your search for a surgeon coming along? Have you found differing opinions on treatment? Hope you have fun at Disney, a perfect distraction from all this!

Renee

hey,
it's tori... (billiejoe) i just wanted to say that my mom spelled the name billie joe wrong on my user name!!! (she didn't know!!!) oh well!!! i'm glad there are more green day fans out there!!! anyways... we think that if i go through with surgery (most likely yes) we'll go with dr. emans in boston. so far, we've seen dr. carl in albany and dr. nuwerth (spelling???) in nyc and they both say that i should definately have it now rather than later... or never... it can lead to deformity... but that's a different story!!! we're back from disney and we had a blast. there were times when the subject of surgery came up and my mom would tear up, but other than that, it was a blast!!! especially since i won't be able to ride roller coasters very long after surgery. does anyone know how long it is until you can ride roller coasters again after surgery???
thanks!!!
tori

[flowerpower]

I would say probably at least a year if at all, from what I've read so far, But I wish you luck as you go through your "journey".

Renee