Friday, August 30, 2013

Surgery (152.6)

Sophie has to have surgery to correct her scoliosis.

I knew it was going to be bad news when the doctor spoke in soft, slow tones. He spoke directly to Sophie most of the appointment, which I appreciated since it's her body. I think it showed a lot of respect for her. When he finally said "surgery," I gave out a little gasp, said "surgery?" and started to tear up. Sophie sat stoically the entire time, nodding her head and speaking affirmations that she understood. I took my cue from her, and held it together instead of collapsing into sobbing.

Doctor's summary was this: she has a 50% curve in her upper spine and lower spine, so it's an S curve, which I already knew from seeing the xray at her pediatrician's office. They took new xrays at the Ortho appt, so he could more accurately measure. He explained that at 10%, they monitor. At 20-30%, they usually brace. 40% always goes to 50%. 50% always goes to 70%. He refers maybe one patient a year for surgery; so some years, he refers no one. The more severe it gets, it can interfere with her heart and lungs.

She has progressed to 50% in a year, or less. We don't have a definite time frame, obviously, since we haven't been looking at her back. But it wasn't bad enough at her last physical to warrant any concern; and her doctor has always performed a back check at her annual check ups.

The ortho doc said there was nothing we could have done to prevent this. It was going to happen, regardless of whether we'd caught it earlier and braced her. Whether that's true or not or if he said it just to comfort me, who knows. Either way, this is where we are.

After the appointment, Sophie said she somehow knew she was going to need surgery. She said whatever she has, she always gets the worst of it. This child has already been through so much, with vertigo since she was 2 1/2, and repeated strep throat infections in 2nd grade. She's had two MRI's and surgery to remove her tonsils. She missed over 30 days of school in Kindergarten, 1st, and 2nd grade. She was diagnosed at the end of 1st grade with ADHD, and the first drug we tried made her hallucinate after being on it a week; hallucinations are obviously rare. (She's been on a non-stimulant med since then, and it works great for her.)

Her biggest concern is getting behind in school. She finally feels like she got caught up in 4th & 5th grade. She was in honors classes last year and is again this year in 6th grade. I told her we and the school would do everything to make sure she doesn't get behind.

She doesn't want to be left in the dark; doesn't want to be treated like a child. She wants all the information we have, and wants nothing hid from her. She asked if she'd be in pain. She asked how soon she'd be able to walk after surgery. I told her she'd have pain but the hospital will treat it with medicine. I don't know how long she'll be in bed afterward, but we'll find out from the surgeon, who we will be making an appointment with next week. Hopefully we will see him soon so we can get questions answered. She'll be seeing a surgeon in St Louis at Barnes Jewish Hospital, which is where her neurologist was so we are somewhat familiar with the campus. The surgeon is one of the top in his field.

Yesterday afternoon and last night were surreal. I felt like I was outside of myself. Mark took the news very hard. He was practically catatonic for 15 minutes, unable to speak and trying to hold back tears. We went in the bedroom for those 15 minutes. I didn't want Sophie to see him like that. We have to be strong for her.

I called my mom & sister and told them. Sophie and I called my mom together. Mom & step dad are praying for her.

I know that God has something special planned for Sophie. He doesn't let hardships like this go to waste. She is a remarkable person already, at age 12.

I'm very conscious of not letting Luke go by the wayside. When my cousin Eve had brain cancer when she was 16, and died within 6 months of the diagnosis, her parents basically excluded her brothers--one older, one younger--from most of the process. I don't know the details, but I know that the younger brother was especially messed up by it. Obviously losing a sister when you're a young boy is devastating, and his parents did the best they could. But it's a lesson to me on making sure Luke isn't pushed aside during all of this.

The doctor said it can't wait until next summer, so she will miss school. He suggests doing the surgery over Christmas break, and if she recovers well, it's possible she'd miss no school. But we have to be practical from an insurance standpoint. She's on Indiana's high risk insurance, which ends on 12/31 because the state is moving to the national health care program. I think it would be financially irresponsible to have major surgery a week before our insurance plans ends. I can't imagine the nightmares that would cause.

We will all be on national healthcare in January. Healthcare reform has a maximum out of pocket of $12,700. If we can wait until January, then our deductible will be met right away, which I think means we will have zero out of pocket expenses--including prescriptions--for the rest of 2014. There are tons of questions around that, though, because the details of plans aren't out yet. They will be on October 1.

I am praying the surgeon says she can wait until January, that she doesn't have to have surgery sooner than that. I need the time to process all this and prepare, as well as figure out the financial impact.

I was not expecting surgery. I knew it was severe, as I can see it in her back and shoulders, and I saw the xray at the ped's office. But I never imagined we'd go straight to surgery in a short amount of time. It still feels unreal.

We took the films home so we can take them to St Louis. Here's her xray:


simply me said...

write down questions as you think of them.
My son had this done (he has rods t2 to hips) done at St.Vincent hospital in Indy (he has many other factors also though so his surgery was a little different than normal).
But a friend back homes daughter just had this surgery done 6 months ago (she is a very very tall girl and grew so fast that her back curved very fast). She is a cheerleader and in 9th grade now. Back to doing back flips on her trampoline. She gained 3 inches from the surgery lol.
They will manage the pain, and I think you will be surprised how fast they recover from this.
Sounds like you found very good doctors to do this surgery.

Vickie said...

My youngest has been thru a lot of medical stuff and is doing well emotionally and physically. She did not miss one day of freshman year (2012-2013) and was involved in many activities. If you remember, I did get a therapist for her (mayo's suggestion). She met a few times based on medical steps and when older two were moving out/college. So it was something like 3-4 in a row and then check ins when major stuff happened. Really good idea.

Smart/good that you are giving her all the information and also being aware of your son in this process. Important not to disrupt his normal life and also to include, fine line.

My husband and I were just talking this morning about how important it is to teach children (I still think of even my 23 year old as my child) how to think, problem solve, work thru things. So this is an important process for your whole family. I think I deal well with tough things like what you are going thru well, because of that outlook. Like what your son will learn thru this process might come into play with one of his own kids, many years from now.

It is AMAZING to me that her spine curved that much between check ups. Very glad she was being checked, because that has to be a huge relief to you. But mind boggling that it happened that severely, that quickly.

Laura N said...

the image is actually flipped. the top of the spine curves to the right. don't know why the iphone inverts pics.

I called her insurance co. She has a max out of pocket of $1500 and we are at $200, so we should only have to pay $1300. Now I want to do it this year. The doc & hospital are in-network, thank God. I didn't realize the out of pocket was so low, b/c we've never come close to hitting it for her. I hope we can get her in the first of December so she'll only miss two weeks of school.

simply me, thank you for sharing. it sounds like most kids bounce back quickly. amazing that the tall girl is doing back flips! sophie is not athletic--her concern was could she stage dance in musicals. I will tell her about the cheerleader & that will make her feel better.

I am amazed, too, at how quickly it happened. I'll have to check our height marks at home to see how much she grew from age 11 - 12. I know we have marvelled at how much both of them grow in a short amount of time. from what I've read, girls have growth spurts before they have a period, so my guess is that's what happened in the last year, b/c she started in June.

I have thought about what kind of therapy she might need, and what I will need. I'd like her to see my therapist, I think. She saw one for the car accident, who she didn't like and I wasn't crazy about either. I'll have to ask Julie if Sophie can see her too.

thank you both for your thoughtful comments.

Jill said...

She is going to be just fine! She'll be dancing all over that stage like nothing ever happened!

Have you talked to Julie about this in regards to yourself? I think you are going to need some extra TLC from your therapist in dealing with Sophie's surgery - it sounds like you are really fragile right now, might be a good idea to get ahead of the game.


jen said...

Sophie seems very brave in all this. I hope they can get her scheduled for an early surgery so she can start to feel better by Christmas.

My love to both of you, and Mark and Luke too.

Laura N said...

I emailed her asst principal so we can get a jump on how to help her while she's out of school. It will be important to reassure her before surgery so she'll be able to stay positive.

Thanks, Jen & Jill.

Moss said...

Very best wishes to you, Sophie and the rest of your family. It has been such a shock for you all but I'm sure you will manage the process with good sense, love and humour. Take care of yourself and each other.

Vickie said...

I agree that it is best to do it the first of December with the insurance you know is in place and understand. (Hard telling what might actually happen after 1/1.)

When my middle was born, the doctor literally said - a girl! - and then - We will have to have to watch this.

This was a mole on her back. It was right where spine and top of underwear intersect. They watched it and it came off when she was 3 or 4, early December of that year. Because of where it was, she had to lie flat on her belly on the floor. No bending. She was a very active child.

That year, we had a lot of snow. Her preschool had school called off for nearly the first two weeks after the first of the year. So she had a very long heal time. She never did split it back open (a miracle if you knew this child at that age).

katie said...

My cousin had this same surgery done here in NYC at Hosp Special Surgery. She was 10 yrs old. Her parents framed it as a very positive thing ie Isn't great that the doctors have a way to fix this for you? She had a good experience and great results! She played sports all thru school too. She's an adult now and still grateful for surgery :)

Vickie said...

how did the holiday weekend go? how is this week?

Laura N said...

Thank you all for your kind comments & support.

The weekend was pretty good. Sophie caught a cold from a friend at school, so she felt crummy most of the weekend, but did ok during the day, mostly run down in morning & night (Mark & I both have the cold now). We went to the children's museum with Mark's sister on Sunday, and then to the zoo on Monday just us 4, and the Mumford & Sons concert Monday night.

We are very good about going to zoos, museums, & amusement parks, and NOT having to Do It All. We go, we enjoy what we can, we don't stress or overdo, we don't hurry. We were at the zoo for 3 hours, and it was enough for all of us.

We ended up taking Sophie to the concert with us. I wasn't planning on it when we bought tickets, but honestly the scoliosis has changed my perspective. I am in a "seize the day" mode with her right now, which really I should be in with ALL OF US every single day. I was so glad she went with us. She knows the songs almost as well as I do, and we had so much fun together. Great memory making. Amazing to hear my favorite band in concert. I'm so thankful we got to go.

My SAD has started already, and for a lot of the visit I felt flat and lacking in a certain amount of joy. Everything went really well and we all had fun, so I know my emotions are being messed with b/c of the SAD. I started using my SAD light this morning. I also made an appt for accupuncture next Friday. I haven't had a treatment in a couple of months b/c of $ ($65/treatment). I need to have it done, though, b/c this is a very difficult time of year for me and it really does help, more than anything else I've tried.

Laura N said...

I called the surgeon's office this morning. They had our old home phone in the system, which we cancelled when Sophie got her cell phone this summer, so I'm glad I called instead of waiting any longer for them to call me. I left a message for the scheduler, still waiting to hear back from her.

Laura N said...

I know it seems early for SAD to start. But the last couple of years, it has started in September. I'm sure it's also hormones and just general depression and worry about Sophie, but I can feel the difference when SAD is added into all that. I also started taking 600 mg of calcium in a.m. and p.m., which a psychiatrist recommended to me in 2009, and it helps too.

Vickie said...

we are having the same issue with our home/original number. Ours is still active, but we do not use it. I have been slowly changing everything over to my cell phone.

interesting about the SAD. At least you know and can start using your light.

Vickie said...

how are things going as we hit the half way point of this week?