Tori before surgery.
OK, on to the next 'big thing'. It was summer of 2006 when everything started. My mother will argue (without too much argument from myself) that she is the one who made the first realizations (the year before) that something was up with Tori's back as she complained about it frequently. Well, as a mom, I know that kids often complain about things just because they ache a little, or to draw attention to themselves (and who wouldn't have that right, being in Tori's position, having followed behind a sister with CF to keep her parents hopping at times!). I didn't pay a lot of attention at that time. Back to summer 2006: Don hugged Tori, and while they were sort of wrestling about, his watch band scratched her back. This hurt, so I had a look to see if it was bleeding and would need a band aid. As soon as Tori lifted the back of her shirt, I realized that there was more than a minor scratch to pay attention to. Without her bending over at all, I could see a lump on the right side of her lower back that was not supposed to be there. I had her bend forward (at least I knew what scoliosis screening is about!), and the curves in her back were very obvious! I called the doctor's office the next day to get an appointment (feeling a bit chagrined that I hadn't listened to my mother...another 'life lesson' perhaps?). The doctor confirmed what I knew (but, with insurance, you can't see a specialist without a referral, so I jumped through the necessary hoops for them). We were referred to a local orthopedic doctor, only to find out that our insurance did not cover that doctor, and the closest one they did cover was at least an hour's drive away. My mother (apparently parents DO know a little bit of something) suggested contacting Shriner's Hospital. So, we did...and thus began our 'real' experience with scoliosis.
Shriner's Children's Hospital in Chicago (in case anyone has charity money they are wondering what to do with, this is a GREAT one...as is the Cystic Fibrosis Foundation, FYI), got us out there for the evaluation very quickly, even provided us with transportation (I have serious anxiety issues with city driving, so this was a HUGE blessing for us!). Dr. Hammerburg was awesome. They took x-rays, checked out the MRI Tori had had done here in town by the other doctor, and asked us to come back in 4 months to check on things.
Four moths later: another trip to Chicago (again, being transported; Shriner's makes sure that these procedures cost the family NOTHING!). More x-rays, and a very frank conversation with Dr. Hammerburg. Tori's curves were increasing more quickly than is typical (can my children do ANYTHING in a typical manner!?). Tori was not done growing, he could tell this by a certain amount of hip bone growth, but he did not feel it was wise to wait for her to finish growing (with a dad who's 6'4", who knows how tall my kids are going to be anyway!). Even though the surgery would prevent Tori's torso from growing further, it would also prevent further curving of her spine and damage to her internal organs (her right lung was already being squished somewhat). The bottom of Tori's left-side rib cage was within a couple of inches of her hip bone, the x-rays showed us just how unbelievable the curves were!
So...we scheduled the surgery for about 6 weeks later (Dr. Hammerburg didn't even want to wait for summer break, that's how concerned he was). February 5, 2007, we were taken to Chicago via Shriner's transport. Don came back from AL to be with me the day of surgery as support for both of us. February 6th, we were prepped for surgery at 8am. Luckily, Tori was older, and the nurses VERY used to helping children feel comfortable, and Tori didn't resent me leaving here there as her medication took affect. We were told that the surgery would likely take about 7-8 hours (could my heart take that kind of stress!?). We sat in the waiting room, walked around the hospital, went to the cafeteria, watched TV, and were scared stiff when the fire alarm went off in the middle of her surgery! You can only imagine what it was like to be parents, knowing that your daughter is in surgery, on one of the most sensitive and dangerous places on the body, and the fire alarm starts blaring! Thankfully, it wasn't anything serious, and it stopped fairly quickly. Don and I were pretty shaken up, worried that one slip could create paralysis in our 13 year old, and this sudden, and LOUD, alarm starts blaring!
After surgery, a smile is a good sign!
The surgery ended up taking only 5 1/2 hours as the doctor felt she was going to be fine with just the posterior surgery, and didn't need the anterior surgery that he had thought she would (posterior surgery means exactly what you are picturing with back surgery; anterior would be going in on her sides, through her ribs, for other corrections). Tori came out of surgery with a very puffy face (being on her face for the entire time, and the drugs they had to give her created this issue). It was SO hard to walk in and see her hooked up to so many tubes, wires, etc! She was in so much pain as she woke up, it was heartbreaking once again. She had a button to push for her morphine, and it was so hard for Don and I to see her pushing the button to get pain relief and hearing the machine not allow it yet as it wasn't 'time' yet. Don allowed me to stay in his hotel room that night and he stayed with Tori. I'm SO very glad that he did that for me as the following 5 days were pretty rough for me alone with Tori at the hospital.
Tori's back, incision covered.
Tori now has 2 rods, 15 screws on her spine, and a C-shaped hook at the top of her spine. The 'after' x-rays are pretty scary the first time you look at them. Tori's taken them to school, and the kids are pretty impressed (especially the boys!). Tori's scar goes from the top of her spine to the bottom of it, pretty much. The used super glue to close the skin, so the scar is VERY minimal! Amazing what medical advances can do!!
Tori did REALLY well in getting up and going when she needed to. I'll admit that she was NOT happy to have to sit up in a wheelchair (with padding and a high back added) within the 1st 24 hours. She was waking to the bathroom 2 days later (with my help, of course). She did SO well, she was SO tough through the whole thing. Very few tears were shed, more by me than Tori, perhaps. She was given the option of going home on Saturday (Don could come pick us up that day, but not Sunday as he had to go back to work in AL), and chose to do that. It was a very rough ride home for her, and it was SO hard for us to see her in that pain.
Sitting up for her required time, but sleeping through it at least!
So...my 2 funnies that came out of this: Don and I are happy to say that we found surgery to straighten out our teenage daughter! And, we now call Tori our 'bi-poler' child!
I hope to have Tori write up her thoughts and feelings about that week of surgery, but it may take time as she IS a busy Jr High student after all!