Newbie - 13 yr old daughter with Quad Cerebral Palsy having spinal fusion surgery

[Amanda's mom]

Hello,
My 13 yr old daughter with Quad. Cerebral Palsy will be having spinal fusion surgery this August. I am looking for parents who have a child like mine who can help me and my daughter prepare and get through this surgery.

Amanda's scolicois is due to her CP. Her spine curves slightly all the way down until you get to her hips then it is severly curved. When I saw the X-ray I cried and cried and asked the doctor if she was in pain. He said no, but I can't but think at least the muscles hurt. Amanda was seen by Dr. Leake from Children's Hospital in St. Louis. He said soon she will not be able to sit in her wheelchair or use her stander and would be bedridden. Her father and I do not want that for her and we said we want her to have the spinal fusion surgery they recommend. I asked if he could just fix the spine that was severly deformed and he said no, if he did that she would flop over. He said he has to do the whold spine. Amanda's father and I as very concerned about right after surgery. 2 years ago Amanda had her colon removed due to Ulcerative Colitis. The surgery was 7 1/2 hours long. She was in ICU for 1 week. She lungs collapsed and she had pnemonia. Could any parent of a child like mine respond with your story and any help you can give to help Amanda and her family get though this time.
Thank you,
Sue

[Carmell]

Hi Sue,

I just posted to you on the other list, before reading the information about Amanda. Hopefully someone else with a child who has CP and scoliosis surgery will reply. I do know of several CP patients who have had successful surgeries. They weren't easy (this is a HUGE surgery for the healthiest of people). As long as you continue asking questions of the ortho and making sure you have everything lined up before hand, you will be fine. Since she's had previous surgery experience, make sure to talk to the pain management people at the hospital and let them know what worked well and what didn't work. If you know the pain management plan before surgery, her recovery will be smoother and less stressful.

With CP kids, I'm not sure how much exercise you can do prior to the surgery to keep the muscles on the weak side of the spine stretched as much as possible. Stretching exercises help most patients.

Good luck.

[lorrie]

Hi Sue,
My daughter Genevieve also has CP (spastic quadraplegia) and had spinal fusion last August when she was seventeen. Genevieve had quite a rough time with the surgery (the whole story is on the forum) but as of now she is well and I would definitely say the surgery has helped her a lot. She no longer has to wear the moulded corset and hip spica which she needed even to sit in her wheelchair - she now has just a small appliance keeping her thighs apart.
She does still get some back ache which we control pain killers and regular position changes but is generally much more comfortable in her body than previously.
The trouble is that there is really no alternative to surgery for these youngsters - the curve is going to progress and eventually severely affect their quality of life. I agree with Carmel - make sure you know what the pain management is going to be and stay on top of it.
Is Amanda having surgery in a hospital you're familiar with - or is this your first lot of orthapedic surgery? How much does she understand about what's going to happen?
It's a really scary time for you and your familyand I'm sending you big hugs.
Lorrie

[lorrie]

Hi again,
I meant to say, don't just look at Genevieve's story, if you look for posts by MegansMom, you'll find that Megan (who also has CP) had a much smoother ride than Genevieve. She's now nine months post op and doing great.
Lorrie

[Amanda's mom]

Hi Lorrie,
Amanda has had 9 surgeries all due to CP, except the colon being removed due to Severe Ulcerative Colitis. We are having surgery done at St. Louis Children's Hospital. We go to Shriner's Hospital, but she is so involved and needs a ICU and respitory therapists available. Shriner's in St. Louis does not have a ICU unit. Amanda had hip surgery at Shriner's when she was 3 she needed respitory therapist 24 hours a day and their respitory therapist only worked during the day. so they transferred Amanda to Children's. Dr. Leake saw her a Shriner's and agreed the surgery needs to be done at Children's. He will have respitroy see her before surgery and she will be in ICU until she is doing well enough to move to IMC or regular floor. I really hate for her to have another surgery, espically spinal fusion surgery, but we are thinking about her quality of life. She loves school, church, talking stolls in her wheelchair. We cannot do nothing and let her become bedridden.
Thanks for reading,
Sue

[Amanda's mom]

Also, I forgot - Amanda can only say Hello, MaMa, Daddy, and A for big brother Aaron. If you ask her for a Kiss, she will give one. If you ask her to push her head switch whe will, if you ask her a question like "do you want to watch a DVD, she will say "A" for yes. She can also say no, but not ofton. We have tried and tried to find communication devices to help her and us, but we have not found one that works for Amanda. So, I have no idea if I can explain the surgery to her or not. I don't know if she is mentally able to understand. Do you think I should try?
Thank you,
Sue

[lorrie]

Hi Sue
Sounds like your Amanda has really been through it over the years - to put it mildly! At least in a hospital you've been in before you'll probably still know some of the nurses and I find that helps a lot.
We've been fortunate in that Genevieve generally copes well with surgery and her recovery has usually been relatively straight forward - apart from the infection she picked up this time.
I think I would try to explain to Amanda at least on a basic level. We tried a few different things with G - at one point we borrowed a model spine from a local hospital to show her and let her feel the knobby bits in her sister's back. The other thing that helped her was to talk about the splints she wears to keep her legs and arms straight and particularly her hand (which gets very twisty). We told her that this was a bit like having a splint inside to keep her back straight. Maybe the staff at school could help - her whole class talked about it with her physio and they downloaded pictures with her.
From what you've said I think G's understanding may be at a higher level than Amanda's but it's so hard to work out what people are taking in when the communication is so difficult. What have you done about explaining previous surgeries to her?
This surgery is so big and scary that it's easy for your brain to just seize up with fright. I was really worried about how I would look after G post surgery - there's a lot of discussion on here about log rolling and dressing and extra pillows etc etc. I got my head in a real knot about it and afterwards found that most of what was discussed was pretty much what I did all the time anyway. It's a huge change for mums of able-bodied kids who are normally independent but being used to doing all the personal care anyway actually gives us an advantage post-op.
Hugs

Lorrie

[Amanda's mom]

Lorrie,
I was looking for Genevieve and Megan's surgery stories on the board, but I cannot find them. Where do I need to look?

Also, where is Genevieve's incision? I understand that the surgeon can go in through the back, front, or both.

Thanks,
Sue

[Alison]

Amandas Mom

if you search for posts/threads by MegansMom and Lorrie (either through advanced search)....or going to their names in the member's list. You'd come up with the stuff written by them about Megan and Genevieive

regards

Alison

[Amanda's mom]

Alison,
Thank you for ansewing my question.
Sue

[lorrie]

Hi Sue
Fortunately, Genevieve's spine was still quite flexible and so her incision was from the back only. This wasn't decided until she had her pre-op assessment a few days before surgery based on push-pull x-rays.
Lorrie