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: