New to forum...daughter has surgery scheduled for August 12th

[MartiAnn]

I'm justing looking for other's experiences and support. Julia, my 13-year-old daughter, has surgery scheduled for Aug. 12th at Lucille-Packard Children's Hospital (Stanford) with Dr. Rinsky. She has cerebral palsy, seizure disorder, GJ tube fed, and is not able to communicate other than to express happiness, sadness and pain. Scoliosis was not an issue until about a year and a half ago. Since then it has progressed quite rapidly. Julia currently has a 41 degree mid-lumbar curve. We've consulted 3 surgeons and have learned that it will continue to progress due to the cerebral palsy and the fact that she has some growing left to do. We can wait on surgery but it isn't recommended due to the fact that as it worsens it will be harder to correct and by then she may develop some complications from the scoliosis (respiratory compromise, other organs being shifted and compacted due to her curvature, and hip dislocation). We agree with the surgeon that it's best not to risk the possibility of further complications but rather have
surgery now while she's healthy and still flexible.


It's been a tough decision to make for our little girl when she has so many other issues. I have a lot of sleepless nights and I'm trying hard to not be anxious. I know many of you have been through this. Anything you have to share would be appreciated!

Thank you,

Marti

[Pooka1]

Hi Marti,

Welcome to the forum. It is very obvious form your post that you are a great Mommy. You had a tough decision and you made it. From what you wrote of the surgeon's comments, it doesn't sound like you actually have a choice. I do not feel I had a choice in agreeing or not agreeing to surgery for my twins. Withholding treatment would have ruined their lives or even killed them. That's not a choice. It's a game of cutting losses. Surgery has some risks and may need revision in the out years but that has to be weighed against the inevitable consequences of withholding treatment now. There were real costs before surgery and the outlook was bad absent surgery. When the up side of the surgery so outweighs the downside, that's not a choice in my opinion. That was certainly the case with my twins and now they have their life back.

I want to tell you that this is going to be very rough on you, especially because you are dealing with other medical issues. But I also want to say that after I saw the recovery and results on my first kid, I felt much better and less scared when the second kid went through it. I don't expect that to relieve your fears but please try to keep in mind that I was less scared the second time for a reason. It's because kids can handle this surgery better than we can imagine.

Stay strong. Julia and you will be stars. :-)

[titaniumed]

I don’t have much to add to Sharon’s response and just wanted to welcome you to the forum. I never had to make a surgical decision for anyone else, it seems like it would be harder, especially with your own children.

I am a proponent of outdoor walking in helping with feelings of anxiousness....it was something that has always worked well for me. Deep breathing and fast walking, transferring your mind to a different place....we all need a mental break once in a while. Yosemite is in your back yard and a great place to do this...

Try not to worry too much ok?

Ed

[kennedy]

Marti
Good luck with your daughters er surgery

[MartiAnn]

Thank you all for your replies.

Sharon, your wisdom brings me reassurance with the path that we are heading down. You are right...we really don't have a choice. I can't believe that you had to go through this with both of your twins. Your words were kind and encouraging and I appreciate it so much. Reading that you were less afraid going into your second child's surgery makes me feel much better.

Ed, thanks for the advice. I will try a nice long walk to relieve some anxiety You've been through this surgery yourself and it appears that you are happy with your results. It's nice to hear that and to know that this surgery really can improve Julia's quality of life later on.

Thank you Kennedy!

[titaniumed]

You've been through this surgery yourself and it appears that you are happy with your results. It's nice to hear that and to know that this surgery really can improve Julia's quality of life later on.

Yes, I am.....it was a long wait, 34 years to be exact. I didn’t have a choice myself as the pain was completely out of control....degeneration in adult scolis is a painful thing.

It seems that when we go through life, there are these hard chapters that we have to go through...... It doesn’t matter what kind of chapter it is, they are hard, and we always get through them.....its something I know deep down, but during these events seem to forget, and suffer with anguish which is a normal feeling. Id like to say don’t do this, but your going to read or experience this chapter and deal with it on your own terms....this is where faith comes in, it’s a saving grace.

Always remember that these things just happen and its never anyone’s fault....there is NO blame. I have a brother who is a Kleinfelter’s patient, 48XXXY to be exact, its rare, and he is one of the most incredible people. Through his “hard chapters” during his life, he never lost hope.....he was always a ROCK and I was the sourpuss. (smiley face) Just when you think the world is ending, there is someone there that reminds you that there is ALWAYS light at the end of the tunnel.

I hope this makes some kind of sense....

Ed