Here we go

[annm]

so we saw Dr Gupta in January and her curves had progressed at least 10+ degrees in 6 months so he decided surgery was immanent. As of today she has a set date of April 30...when we set the date a piercing sick butterfly feeling went through my core...can we do this?? I can't even imagine how she is going to feel. Keeping pictures of the future in my mind will have to pull me through this terror I'm feeling.

[Pooka1]

so we saw Dr Gupta in January and her curves had progressed at least 10+ degrees in 6 months so he decided surgery was immanent. As of today she has a set date of April 30...when we set the date a piercing sick butterfly feeling went through my core...can we do this?? I can't even imagine how she is going to feel. Keeping pictures of the future in my mind will have to pull me through this terror I'm feeling.

Hi. You can do this.

Here is something for your daughter and you... I think you mentioned your daughter was a competitive swimmer. Here is a testimonial of a very competitive swimmer who did very well in competition after fusion...

ACC champion

[annm]

She quit swimming last spring , it was hurting her upper back too much...she is in color guard now...did you ever find yourself second guessing your decision and agonizing over making such a big decision? My mom is still against it, but is coping now. My daughter and I are in a little shock now, just trying to process what is about to happen.

[Pooka1]

She quit swimming last spring , it was hurting her upper back too much...she is in color guard now...did you ever find yourself second guessing your decision and agonizing over making such a big decision? My mom is still against it, but is coping now. My daughter and I are in a little shock now, just trying to process what is about to happen.

I never really had a reason to second guess the decision. My daughter's curve was moving at 5* a month for the entire observation period from September to March. I think the curve would have killed her if she didn't have it corrected. My husband was sort of at sea with it all and didn't really know what to say as far as I could tell. I was doing the research and I don't know what research he did but he didn't really question the need for surgery to me or the surgeon.

For the second kid, the curve had picked up speed and was moving almost as fast as with the first kid so I realized there wasn't a choice with her either. And after seeing the first kid's fast recovery and cosmetic result, I was much more comfortable with the idea of the second kid having the surgery. Seeing is believing. My husband was under some impression that the brace would likely work for the second kid and was actually mad when she needed surgery. I don't know what was said at the bracing fitting with the surgeon so I don't know why he got that impression. Any review of the brace literature would have disabused him of being so certain.

None of this is easy. This scoliosis episode has shortened my life I feel. But all you can do is play the cards you are dealt and cut your losses. Life is unfair. What can you do?

You can do this.

[tampamom]

Sorry to hear about your daughter's pain and curve progression, I know facing surgery for your child is scary. My 14 has just been diagnosed and we are looking at surgery too. Being such a planner, I have to remind myself that I can't control the outcome. That I can meet with the doctors, support groups and research every possiable treatment, then I have to just Trust. Trust that we are making the best decision we can and it will be okay. As bad as this diagnosis is for my son, I try to remind myself there is hope, it could be worse and to be thankful for what we do have.

To quote my son on the first day he found out " I don't rush, but don't want to put it off either"

Stay strong,

-C

[kennedy]

annm i know exactly how you feel. when the call from uc davis spine center with my surgery date 3 years ago i got the betterfly feeling also. it was to be done on march 19th 2010 but dr gupta moved it up to march 10 2010. which was the week before. also dr gupta also works at shriners

[annm]

Thank you all for your insight and wisdom. I know every case is different, but do any of you have an idea of the estimated time line from day before surgery through to recovery. I have no idea how to prepare or what is going to happen...we just found out the date this week. I don't know how to schedule the time off or how to set up my apartment...can any of you advise...feeling overwhelmed

[Breezemom]

Hey Ann,
I sent you a PM - seems we are in the same area with very very similar circumstances - even the same surgeon. I have the Scoliosis Surgery book I can lend you which has some great insight on all the preparation stuff. We are hoping to get a surgery date this week. I just wish that we had had more time to adjust to the whole idea. Maybe we could talk. Let me know. I know for us preparation will include getting a recliner, getting rid of the loft bed with a ladder, and getting one of those back wedge things. Best of luck to you!

[annm]

Thank you for your offer of the book we have a few of them, yes we purchased recliners over last summer in preparation, she has a nice new mattress...others have suggested temprapedic, but they are expensive...

Hey Ann,
I sent you a PM - seems we are in the same area with very very similar circumstances - even the same surgeon. I have the Scoliosis Surgery book I can lend you which has some great insight on all the preparation stuff. We are hoping to get a surgery date this week. I just wish that we had had more time to adjust to the whole idea. Maybe we could talk. Let me know. I know for us preparation will include getting a recliner, getting rid of the loft bed with a ladder, and getting one of those back wedge things. Best of luck to you!

[titaniumed]

Ann

Try not to worry, its going to be ok. Deep breaths!

Once again I’m throwing up Linda’s webpage. Some reading material for now.

You don’t have to buy much....

http://www.scoliosislinks.com/PreparingforSurgery.htm

Ed

[annm]

Can any of you give me ideas how to plan for the return home, (items, obstacles, comfortable places for her) what to be prepared for (worst & best case), so we are not so overwhelmed...any insight would be GREATLY appreciated.

[LSKOCH5]

First - physical therapy now to help w the current pain & to strengthen for surgery. Ask about starting up again post, usually 6 weeks out.

Ann

Try not to worry, its going to be ok. Deep breaths!
Once again I’m throwing up Linda’s webpage. Some reading material for now.
http://www.scoliosislinks.com/PreparingforSurgery.htm

Ed

This list was a great guide for us - biggest helps: memory foam topper, pull on pants & button down shirts (same w pjs!), zip up hoodie, slipper socks (he was always cold), soft blanket/pillow pal for comfort, fruit juice for constipation (from the painkillers), peanut butter crackers/any kind of crackers/applesauce/dry cereal/scrambled eggs, etc as meds are a catch-20 - have to take w meds w food to avoid nausea, but the nausea made want to avoid food (check w your surgeon, as some want no food til the 1st b.m.). Expect for them to lose 10% body weight - someone here encouraged us to stock up on ensure/pediasure, whey protein powder etc to mix w Breyers ice cream for shakes every day; it worked - bony boy actually filled out a little. Lots of soft pillows. Some sort of bench for the shower - w a handheld shower for when they're allowed to shower, to avoid falls. You will be bathing your child for a little while. oh - SOFT sheets/pj's/shirts - he was extra-sensitive & I was forever smoothing out the sheets - rather like the Princess & the Pea.

While in the hospital - you are your child's advocate - the nurses have many other patients & can get sidetracked from your child's med routine. Stay ahead of the pain, as it's the worst to see your child being ruled by the pain. Set your watch for 10 minutes before the meds are due, every time, & grab a nurse to make sure she gets them on time. Comfy clothes & reading materials, phone charger for you as you'll be living in the hospital w her while she's there.

You'll probably wince (stomach rollercoastered for me) every time there's a first - the 1st time sitting up, getting out of bed, walking, but it's amazing how fast they move beyond each & fly through recovery. Movement is key! Walking a few times every day as they are instructed, sitting instead of lying down, etc. Two weeks in Jacob said he wanted to stop taking painkillers as he hated the way he felt w them & that walking, even pacing, was the fastest pain reliever.

You are strong, moms, & you are doing all the right things by educating yourselves & talking w those who have been through it. We can & will do absolutely anything to ensure the best possible situations for our kids. You'll find that the time before surgery flies by at warp speed, then it's pure faith as you hand your child over to the surgery team, then you're on the other side of it, & recovery speeds by, as long as they do what they're supposed to. They'll do schoolwork at home, though they're rather muddle-brained from the meds for a while. Many teachers will go very lightly on assignments & tests. At 5-9 weeks, they'll go back to school w a note from the doctor to leave each class early to avoid hallway jams, to use elevator instead of stairs, to have a set of books at home & in each class to avoid carrying them (obviously no backpacks). Hope this helps, as others' input helped us so much.

[annm]

What a wonderful thing you have done here!!!This is so helpful...I am a planner, for planning then plan for the planning...lol thank you so much...as I read everything its just a matter of keeping them comfortable and content and keep the digestion moving.

[LSKOCH5]

You're so welcome. Don't hesitate to ask on here - everyone is so helpful. Feel free to email if you'd like -

[Kat3573]

Hi annm! Im sorry that you have to go through this, but everything happens for a reason and what doesn't kill u makes u stronger I recommend button down shirts, loose tshirts, yoga/sweatpants, a bra that hooks in the front(this is sooooo helpful!). Hospital blanketed are Terrible and thin so u definitely want some blankets. Chapstick too cuz he won't be able to drink any water. For me, I would occasionally watch a movie(but the hospital provided a tv and movies appropriate for kids)
Wish u all the best! Good luck!