surgery before

[nicoles mom]

HI EVERYONE
NEW HERE

MY DAUGHTER NICOLE WILL HAVE SURGERY ON MARCH 30,2005 WITH DR.BOACHIE AT HSS. COULD ANYBOBY TELL ME HOW TO GET NICOLE READY FOR THIS TYPE OF SURGERY. SHE IS NOT TAKING ABOUT IT AND I JUST DON'T KNOW WHAT TO DO.I TOLD HER THE OTHER DAY THAT I WILL HAVE TO HELP YOU IN THE SHOWER AT FIRST. SHE LOOKED AT ME LIKE I WAS OUT OF MY MIND.SHES 12 AND DOESN'T WANT ANYBOBY LOOKING AT HER.I KNOW SHE JUST DOESN'T REALIZE WHAT IS GOING TO HAPPEN.SHE HAS NO INTEREST IN READING THE WONDERFUL WEB SITES OUT THEY.
ANYBOBY HELP!!!!!!!!!

[Joe's Mom]

I always found that taking advantage of resources at the hospital are a good thing. Hopefully your hospital has a Child Life department . . . call them up and ask if there is such a department. OFten they offer tours before surgery and that will open up lots of questions. My son has had 4 surgeries (none spine related yet) at 2 different hospitals. It is never easy, but knowing in advance a little about what to expect logistically (like seeing a room, seeing pre op/post op, etc) was a help for both of us. We also borrowed books from the library about surgeries and read them . .when he was little, I got a Mr Rogers book and kids books about surgeries and hospitals. As he got older, we got more age appropriate books.

She may not know what to ask or what to think. Plus I think sometimes kids just want to put it out of their minds for as long as they can. I know with my son, what helped the most was the fact that I was allowed to be in a cot right beside his bed.

[Alison]

G'day

You have come to a good place, you'll find lots of people more than willing to give help, assistance and a good "ear" to listen.

There are some threads by a couple of Mums, which I would highly suggest reading, they are by Mary Lou and jc3 (I think there's another one but it doesn't spring to mind at this present minute :-). Their daughters have just recently had the surgery, and they posted some very good discussions on things (preparations, how they/there daughters felt before surgery, the recovery) before and after.

Have you had a look at the Spinekids website. http://www.spinekids.com/boards. On there is a bunch of teenage girls (about the age of 11ish upwards I've seen posts) who chat about things scoli (wearing a brace, having surgery, people's reactions to scoli, how scared you are before surgery etc) and things not scoli related, such as what's your favourite movie, about T.V shows etc.

About the shower stuff...............there's ways you can get around "I don't want my mom to see me naked", which when you're 12 is a completely normal reaction. One way we got around it (my Mum for me) was that in the hospital once I was allowed a shower, she would help me have a shower, and I was still on lots of pain medication, and very sore, which meant I wasn't particularly worried about who saw me, how. Once we got home, Mum and Dad put a hose connection onto the shower (like the one's you see in disabled showers, there is a hose connection to the water and there's a normal shower head on the end of it). I would stand there in wrapped in a towel, whilst she took the hose off its hook, turned the water on for me etc. She'd then stand just outside the door whilst I got into the shower (you normally are sitting on a shower seat in the shower for the first bit) and washed the front part of myself. Mum would then hand me a towel and I would cover my front whilst I was still in the shower. She would then wash my back (and my hair if need be) whilst I was sitting there with the towel over me. It meant she had a sopping wet towel to deal with every night, but it kept the peace (as she put it later) and everyone remained happy.

Best wishes

Alison

[susannajon]

Hi Nicole!

My daughter is 13 and having surgery with Dr. Boachie on March 9th. Does you daughter IM? Maybe we can hook our daughters up and they can talk to each other. My daughter and I started hashing this stuff out a couple of years ago when she was first diagnosed, so she's pretty much resigned herself to what it's going to be like in the hospital and when she comes home.

Maybe your daughter would be more open to discussing some of this with another kid? Send me an e-mail or a PM and let me know if you'd like to try and get the girls talking to each other. It would probably be good for both of them!

Susanna

[Mary Lou]

Nicole's Mom,

My 13 y.o. daughter Jamie is two months post so I understand what you are feeling. When Jamie was diagnosed she never wanted to talk about her back. Now, things are totally different! I always made it a point, especially when preparing for surgery to talk about it to her and I usually didn't get a response, but listening to her now, I know she was listening. I got a lot of support/suggestions from this forum and would just mention at dinner what I read that day, or driving in the car (where they can't run from you, lol) I would start talking about what she could expect. We ended up being prepared for the worst, as I even mentioned the possibility of death or paralysis to her, and ended up with the best. The modesty issues want usually come into play until after you are home from the hospital.

Best of luck.


Mary Lou

[nicoles mom]

surgery

THANKS FOR THE ADVICE
SHE CAME HOME FROM SCHOOL YESTERDAY AND SAYS SHE DOING HER HEALTH REPORT ON SCOLIOSIS.I WAS KIND OF HAPPY ABOUT THAT.SUSAN SHE DOESN;T WANT TO IM YOUR DAUGHTER YET.BUT I;M WORKING ON THAT.I'M SO GLAD TO HAVE YOU ALL TO TALK TOO.
THERESA

[jc3]

hi theresa
my daughter is 14 and just had surgery with dr. boachie on nov. 3rd. My daughter did not talk about it either before. I really thought she was in denial about it. I did try and bring it up every now and then or just mention something about the surgery just to make sure she knew this was really happening. The night before her surgery she broke down and finally showed some emotion, she was very scared. About the shower thing, don't even make an issue of it she will change after the surgery about you helping her with things like showering, etc.. she won't have a choice, she will NEED you for things like that and i bet it won't even be an issue.
Jennifer

[nicoles mom]

THANKS JENNIFER
I THINK SHE WILL TO THE SAME AS YOUR DAUGHTER DID.I'M JUST SO WORIED HOW SHE GOING TO GET THROUGH IT ALL. I'M SO GLAD I HAVE ALL OF YOU.AND IT SOUNDS AS IF I'M GOING TO THE RIGHT PLACE TO HAVE THE SURGERY.I LIKED DR. BOACHIE AND SO DID MY DAUGHTER. HER OTHER DOCTOR WHO WANTED TO WAIT TO DO SURGERY [IN THE SUMMER].HE NEVER TALKED TO NICOLE.AND MY NICOLE IS A VERY SHY KID QUIET.BUT THIS GUY DR. BOACHIE SPOKE TO HER AND SHE FELT COMFORTABLE WITH HIM RIGHT AWAY AND EVERYBOBY IN THE OFFICE WERE SO GOOD WITH HER.

[jc3]

hi theresa
dr. boachie is supposed to be a really great dr. even when my nicole was in surgery and staff at the hosptial would ask me who is doing her surgery when i would tell them they would all say you are in the best hands. I see you are from long island as i am also. Who did you use before you went to boachie. We were using dr. raggio. This board is great support, i don't know what i would have done before the surgery without all these people here. Before surgery was very stressful. It is also a tough time for all our kids going through it. It has to be very scary for them. It is amazing how great my daughter is doing. The first few weeks were tough, but it all goes so fast.
good luck and stay in touch
jennifer

[nicoles mom]

HI JENNIFER
WE WENT TO DR.LEWIS IN EAST MEADOW.WERE DID YOUR HUSBAND AND FAMILY STAY IN THE CITY OR DID THEY TRAVEL IN.I HEARD ONLY ONE PARENT IS ALLOWED TO STAY.
THANKS THERESA

[jc3]

hi theresa
At the hospital we ended up getting a private room. It was so nice. It ended up that the private room was empty so they gave it to us. It made the stay so much nicer. It was big and had windows all around the whole room with a great view of the east river, a refrigerator, a big tv and lots of space. They told us that alot of famous people were in that room. All the rooms have a great view i heard. When you go for pre-op they will take you to the wing she will be in. It was pretty empty when we were there. They said they don't do alot of scoli operations in the winter, most are over summer break. Anyway, my husband was going to stay at a hotel nearby, but ended up just going back and forth. I stayed with her the whole time and did not leave, he took a leave from work, so he would come in the morning and stay until about 10-11 at night. It's only about a 45 minute drive for him less really the way he drives and he didn't mind going back and forth. They had a chair next to her bed that opens to a bed for me and a shower in the room that i was able to use. At the desk, they had all menus for food delivery, which when nicole was feeling better we ordered chinese food and had them deliver it. They said nicole could have soup if she would sit up in a chair and eat it, she said forget it and at the corner was a deli, which i would run down to and get myself something to eat. Food was the last thing on my mind there though. It's a good way to loose some weight. What are you doing about staying there?
Jennifer

[nicoles mom]

JENNIFER HI
WELL I THINK I'M GOING TO HAVE MY HUSBAND STAY AT A HOTEL NEARBY JUST FOR ONE OR TWO NITES.THEN HE IS JUST GOING TO GO BACK AND FORTH MOST LIKEY ON THE TRAIN.PARKING THE CAR AND THE HOTEL IS JUST TOO MUCH$$$.I HOPE I CAN TAKE A SHOWER ALSO WHILE I'M THERE.I'M NOT MOVING FROM HER SIDE MAYBE JUST TO GET FOOD.I HOPE I GET THE PRVITE ROOM.WE MADE NEED IT.WITH THE FAMILY COMING MY MOM SISTER INLAWS MOM PA AND TWO BROTHERS.THANK GOD NICOLE IS MY ONLY CHILD.ALL I HAVE TO WORRIED ABOUT BACK HOME IS THE DOG.

THANKS FOR THE INFORMATION
MY STOMACH FEELS A LITTLE BETTER

[jc3]

hi theresa
that's a good idea to have him stay at the hotel nearby. I have 2 other children younger than nicole so i had my parents come in from florida to watch them. You will definitely be able to shower i'm sure all the rooms have showers even if its not a private room. They were very accomodating. I stayed by nicole's side the whole time also i would only leave to go downstairs and get a cup of coffee or to the deli to get something to eat or just go outside for a minute for fresh air, sometimes you need to just walk around to get out of the room. It was also good when the physical therapy people would come, nicole always seemed to cry more of the pain when i was there, so thats when i would go out of the room for a minute or two. They wheeled in a computer, which was my life saver i went online at night or when she was sleeping it helped with the boredom. Be careful with the amount of visitors, nicole really didn't like when there was alot of people in the room and it was noisy, she wanted everyone out. She did ask for her friends and my husband took them there and she was so out of it from the morphine she slept the whole time they were there, but they really wanted to see her. I think it scared them a bit and that was day 4. It will be over before you know it and you're in great hands there. Just keep track yourself when she had the pain meds, so you will know when she is due and you can get the nurse. The hardest part was waiting while she was in surgery. I couldn't wait until dr. boachie came and said everything went fine and she wiggled her toes. That was the happiest moment!!
jennifer