What is surgery like?!

[jc3]

hi cheryl
thanks for giving me some insight on what to expect after surgery. Did you stay with her the whole time in the hospital? I am planning to. I have my parents coming in from florida for the week to watch my other 2 children. I am so nervous, i just hope this all goes well. I told her that i want to take some pictures before and i don't know if she will want me to. I called the drs office yesterday and asked if my husband or i have the same blood as hers could we donate for her and they said yes so now i have to find out all our blood types, but someone here was saying that they have a quicker recovery with their own blood i don't know if that is true. I am going to talk to the dr. about that. I just figured it would be one less thing for her to have to go through.
thanks again for writing, it really helps
jennifer

[mumof5]

Yes I stayed in the hospital with Amber for the whole 9 days that she was there. My parents looked after my other 4 children.
I snuck a few photo's of Amber. I actually have a photo af Amber bending forwards (was playing with her 3 yr old sister) all you can see of her is her bare back, it really shows the problem. It shocked her to see it, she didn't realise how bad it looked. But she was really good about doing the before and after shots. I told her that later on she would want to know how much difference to her appearance the surgery had made.
In the hospital they let me take photos everywhere. I even have a photo of her with the mask on her face. They put it on her face to let her know what it would be like and so that she wouldn't be frightened. I took the photo, they removed the mask and told her that when they put it back on there would be gas coming out of it.......... It really helped her and I got a great photo that I wouldn't have otherwise had because once the mask went on for real I was holding her hand and talking to her.
If you want a photo of something just ask them. I was told that if you get anyone else in the photo you must ask there permission first. But in our experience everyone was fine. Back in the ward one nurse even jumped in the bed with her. To make her girlfriends jealous he said.
If you yhink of anything that you want to know just ask, I'm only too happy to help if I can.
Best wishes.
Cheryl.

[jc3]

what surgery is like

hi cheryl
i would love to get a picture of nicole bending over, i really don't think she knows what her back really looks like or she is just in denial.
thanks for writing me and if i can think of any more questions i will be sure to ask and i'm sure alot more questions will come up in the near future.
thanks again
jennifer

[leyvtl]

Hi mumof5
I had one in 2001, one in January of this year, and then one about 7wks ago. The first one was to correct the major curve in my spine. After that I started curving again above the rod they placed in 2001. That time they put 2 more rods in (total of 3). Then July of this year they took out the very first rod because it was pressing against the main artery to my heart. But, through it all, I am doing awesome with God's help....

[mumof5]

Jennifer, I'm glad I can help a little. I"ll do my best to answer things for you either here or in a private message. Ask away.

Tiffany, Where were you fused during your sugeries? It's a shame you've had to go through it all so many times. Amber's surgeons have said it still is better to stop short and have more surgery than to go to far unnecessarily. You sound like a strong person to still be positve after three surgeries.

Best wishes.
Cheryl.

[leyvtl]

Hi Cheryl,
This is Tiffany. Yes I was fused. I have about 8 or 9 vertabrae that are fused.

[mamakay]

Hello Cheryl and Jennifer and others,

Thank you for you words of comfort,You are right Cheryl there is always something to ask.You are helping all of us not yet thru the surgery side and I appreciate your advice. I hope Amber is still getting better.
Jennifer,
Thank you for wanting to share this unfortunate experience with me. It really does help to know we're not alone.
Yes Nov 3rd and blood wise we are investgating if my husband and I can match her type then donate for her. Our pre op is Oct 21st bc our Dr goes on vacation a week before her surgery and he wants to do a new set of xrays since the ones we have are from June and you know how fast this curve can change.
He didn't mention any "bending xrays" as the other Dr wanted to do if we chose surgery with her. Are you aware of these type xrays?
I think getting a? rib taken out will be fine as they probably can use it for the fusion instead of another incision.
Many people here have had that done and are happy with the results. I don't know why they haven't said anything bc ste's hump is obvious and the rib from what I've read has grown crooked accomodating with the spine and they can't straighten them out.
Also we have to be at the hospital at 6:00am for the 8:00am surgery.
I'm sure I will get alot of sleep the nite before.....NOT!!!!
I'm worried bc we will have to stay at a hotel the nite before so we can be there on time as we are traveling 3 hrs from home for this and traffic can stop for hours so we don't want to be late.
Cheryl didn't you have to travel also?
Also I worry now that we will be sleeping in a hotel my Stephanie won't get a good night's rest and I think that could be important.
Plus!! The weekend before is Halloween and I know my husband will argue with me to let her have a fun (late and crazy) time then she will probably be rundown and catch her 2nd cold of the season like always!!! I know I sound like a worry wart but as a mom THESE THINGS I KNOW.

[mumof5]

Amber is improving everyday and is doing more and more things all the time.
Bending x-rays are done standing up and bending to the side. They do this to see how 'movement' is in the spine. The more movement there is the better correction they can achieve.
When Amber had her last bending x-rays done they showed that she was starting to 'fuse' she didn't have much movement left in her lower back and her L4 was 'quite oblique' which means rotated. But all that said they got better results than they told me they expected to get.
Amber had 5 ribs done to help with the hump. One possibly two haven't grown back as well as hoped and may need further surgery but as far as I know it is mainly a cosmetic concern now. I don't know if that will change or not though. She is happy with the result.
Yes we had to travel. The hospital is in Sydney and if there is no traffic you can do the trip in just under 2 hours. Then you have to find a park. That can take another 30 mins by the time you get back to the hospital. My father drove us down to the hospital. My car is a very sad thing that just wouldn't get that far.
Every time we have had to be at the hospital our appointment times have been between 8 and 9am. Which has meant leaving home around 5am to drop my other kids off with my mum and change cars. You can never pick the traffic.
Amber had to go into hospital a day early as she had to have some extra tests done. It was easier because we didn't have the worry of travelling the day of the surgery.
We didn't get much sleep the night before. Not that Amber remembers. But I think the next night is the hardest because you are already tired but in Amber's case she was in ICU and I didn't want to go to sleep in case she needed me. Silly I know but I'm just a mother.
As for Halloween, we don't celebrate it here so I'm not 100% sure on what goes on, but maybe you could set a strict curfew, Or organize to do something that could become a new family tradition.
Best wishes.
Cheryl.

[jc3]

what is surgery like

hi mamakay
i am now investigating also if my husband or i are a match for nicole's blood so she doesn't have to donate. It will be one less thing that she has to go through. in order to find out i had to call the hosptial where she was born and they sent me some papers to fill out and they will mail me my blood type and hers and i have to find out my husbands, i guess for his dr and our next step is Oct. 11 she has to go for all the pretests; mri, ekg, etc.... they scheduled everything for us that day and then three days before the surgery she has to go to the hospital for more tests. My mother knows someone whose daughter had the surgery and as a matter of fact she called me today to talk to me about the surgery and she told me that her daughter's first surgery date was cancelled because the child got sick with a cold or something. So what you wrote about going out on halloween and getting run down is true. i really didn't think of that until she mentioned that to me. That has to be the worst to be all ready for this surgery and then they get sick and it has to be postponed. She also said when they rescheduled she kept her out of school for a week before so she wouldn't get sick.
Also, my dr. did mention when we go back to him that he will do the bending x-rays on her. I don't know what it is for though.
i wouldn't worry about being in the hospital the night before and her not getting a great nights sleep she probably wouldn't at home either. We may do that too, because we have to be at the hosptial at 6:30 and the hospital is alittle over an hour away. I can't even imagine that morning or that night before. I am sick thinking of how nervous i will be.
well, keep in touch it makes it easier talking to all of you.
thanks
jennifer

[mumof5]

I would just like to say that I found the hardest part, as a parent, was while she was actually in surgery. The night before, Amber and I didn't get much sleep. The morning of the surgery wasn't too bad because we keep each other occupied. I was by myself during her surgery and for the first 3 hours or so there was no-one else in that part of the hospital. I couldn't read or watch T.V., my mind just kept wandering and I was constantly looking at my watch. Other people started to come and go from the waiting room, which made me notice even more how long Amber's surgery was taking. If possible try to have someone with you while you are waiting or send sms' (mobile phone text messages) to each other.
While Amber was in ICU and I had to sleep was hard, because by the time I had gotten to my room I couldn't sleep because I was worrying again. I only managed about 2 hours sleep after I had called every one to let them know how she was. After that it was ok because from then on we were in the same room. I still didn't get much sleep because of her being turned all night, when I wasn't too tired I got up to help (I figured I would need to know how to turn her when we got home).
If I can help with anything else please ask.
Best wishes.
Cheryl.

[jc3]

what surgery is like

mamakay,
where are you having the surgery? Just curious and i forgot to ask.
also, cheryl I just spoke to someone who's daughter had this surgery and she was out of school for 3 months. That seemed alittle long to me, what do you think on that? I am hoping nicole isn't out that long!!
also, what to bring to the hospital any suggestions. I know it is alittle early on that, but i'm thinking of all these things.
thanks
jennifer

[mumof5]

I don't think it is too early to start planning what to pack. It gives you a chance to get anything you don't have and to help make sure you don't forget anything.
Amber had 7 full weeks off school. She went to school Tuesday and Friday that week then school holidays started (2 weeks). Since then she has been going 4 days a week. Mon, Tues and Thurs, Fri. She has had the occasional extra day off if she has been sore or 'tired'. At first she was just going for as long as she could. The first day I think it was 90 minutes. Now she stays for the full day. She is almost 18 weeks post-op ( on Wed). It is just a matter of building up again. It was very (still is) hard for her to sit for too long.
What to take to hospital.
For the first 3 days Amber was in 'hospital gear'. After that she wore a chemise, with long button up pyjamas with a drawstring waist over the top. To get the chemise off I loosened the straps and she dropped it to the floor. To put it on she stepped into it I pulled it up and adjusted the straps. For about 4 or 5 weeks she could not get her arms above her head. This does depend on how high up the fusion goes. The pyjamas were easy to get on and off with a little help.
Slip on shoes with good grip. Amber found shoes hard to deal with for quite a while. Make sure your daughters have some slip on shoes for when they get home as well.
If you are a reader take books. Amber slept a lot, and complained if the T.V. was on. You will lots of time to yourself for the first few days.
Amber did get a little 'snappy' which caused a bit of friction between us which would upset her because she didn't want to upset me. But everyone gets cranky when in pain. It was one of the things I wasn't really prepared for though.
I ended up buying from the hospital a few pamper things for her. Which would have been cheaper if I had of thought it of before. Leave in hair treatments. All the items needed for a manicure and pedicure. It gave me something to do and made her feel good. Well worth it.
I'll add more as I think of things.
Best wishes.
Cheryl.

[jc3]

what is surgery like

thanks cheryl for your suggestions. They were great. I will keep everything you told me in mind. I think today i will call the school and make an appointment to talk to the guidance counselor and the school nurse to let them know about this.
nicole is very mad about having to have the surgery. I just wish this was over already. I am very nervous about the recovery.
thanks again
jennifer

[mamakay]

Hello Cheryl and Jennifer,

Wow thanks for all the info on packing and hospital sitting.
Yes, I have been thinking what to pack bc the weeks are going by fast and like Cheryl and Amber we will not be a hop and skip from home but in case something is needed my mother in law lives in Houston so I know it will be easier for me to have some thing bought and brought to us.
(I'm sorry you had to sit alone Cherly, I'm sure I was thinking about you since I have been reading these posts for many many months.
Just this morning I started a list to begin putting things side. Someone mentioned pillows for the ride home so good thing we have a suburban.
Jennifer the surgery will be in Houston at the medical center downtown. (which is a city in itself!)
(I will be glad to answer more detailed questions if you want to email me.)
She will be out of school Nov-January when school begins again after holidays. We tried to plan it this way.
Iam so concerned about her return as it is high school (10thgrade) and with stairs and crowded hallways I am scared she will get pushed down stairs or smashed in her back since everyone is carrying backpacks thanks to no lockers this year.
I don't know yet what pre tests they will require from us.
We have already had a MRI done on her (neck to feet).
It was a little intimidating bc of the size and noise of the machine but I was able to sit in the room w/her. I think this was important and hopefully as the parent of a minor you can request that.
At least to ease Nicholes fears. Also no needles were involved tell her.
Well I must find about the blood today (I pray we can donate for her.)
Sorry for the long post..
write again and take care all, Kay

[jc3]

what is surgery like

hi kay,
i figure nicole will be going back to school around that time also. My worry is also getting bumped in the hallways and i guess she will not be able to ride the bus to school in the beginning so i will drive her. I called today and spoke with the guidance counselor and she told me that it is good i called now so they can get the ball rolling with the tutors. I have to have the dr. fax a letter to them saying approximately how long she will be out and they said when she comes back she will get a set of books for home and an elevator key. this i am worried about also, my daughter is petrified of elevators, so i don't know if she will go in it. You know those school elevators look like a hundred years old as it is. so we'll see about that. That should be the least of my problems.
how long did the mri take? Nicole had one when she was first diagnosed with scoliosis and she did fine with it, but i think this one may be longer and more involved.
thanks again for writing, keep in touch
jennifer