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SluggosMom
03-08-2011, 06:36 PM
My 4 yr-old daughter has had growing rods since March of last year, and has had one extension in October. Her next extension has been scheduled for May--we were hoping for a little more time in between extensions, but she's been growing like a weed! Her last extension actually included revising the hardware a bit--switching out hooks for screws at the top, since she had grown enough that she could support the change. Her next extension will probably include replacing at least one of the rods, since her growth has been so much better than predicted. She's had some kyphosis develop just above where the rods are anchored, but the surgeon isn't sure yet if he's going to address that.

I'm finding that I'm nervous already! It's not like we haven't been through a lot with her before this--she's a diaphragmatic hernia survivor and has a g-tube. We also have a lot of faith in her surgeon. But does this ever get "routine?"

Pooka1
03-08-2011, 07:56 PM
I can't answer that directly for your situation.

I can say I was much more relaxed about my second kid's surgery (10 level fusion) than the first (also a 10 level fusion). The reason is I saw the recovery and it was manageable and suitably quick. She was back in school full time after ~25 days and I was off the ledge about everything pretty much. And I saw the result and realized she can put this entire episode behind her perhaps forever and move forward.

I felt comfortable enough with the safety of it to be able to drive the dozens of miles to pick the other kid up from school and come back to hospital. As I returned I just missed the surgeon and got the report from my husband. That kid had an easier/quicker recovery than the first. And she has moved on in life, this hopefully being her only surgery also.

You have already gotten some great results with the growth. It sounds like the instrumentation is working as planned. And you have seen the safety of the procedure. Hopefully at some point you can relax a bit about the future surgeries which hopefully will let your daughter avoid a fusion. Try focusing of the track record of safety and the results you are already seeing.

I used to fosus on the unfairness of it all. But then I realized that was useless and now I play the cards as dealt, hopefully as skillfully as possible. That's not just all we as parents can do but it is also the best thing we can do.

Good luck.

Resilience
03-27-2011, 10:37 AM
I also can't relate directly but wanted to offer support.

Scoliosis inherently takes us on a path of wait and worry, fill in the blank: X Ray, Rod Lengthening Surgery etc, recheck, relief, relax for a bit. Repeat.

I wish you the best for you and your child. Perhaps your surgeon can recommend some other families who are farther along in the process for you to connect with. At the beginning of this all for us, before I found this forum, I was in tears on the phone one day with our doctor's assistant and she offered this to me, if i'd like to speak with a mom who's been through this? It really helped me a lot.

Best Wishes