It was last year when I noticed it. My then 13 year old daughter bent over to pick something up in her swimsuit - and there it was. Two HUGE humps on her back. One of the upper right and the other on the lower left.
My heart sank as I knew immediately what it was.
Scoliosis.
Odd thing, you hear about scoliosis all throughout grade school, when the students go to the school nurse and do the 'bend over and touch your toes' routine. For some reason however, you never think it will affect your child.
After seeing three specialists in spinal deformity, a nightmare was our reality. She needed spinal fusion surgery. The orthopedic surgeon at Children's Mercy in Missouri said that it wasn't a question of if she'd need the surgery - it was when.
Her spine was so twisted - a 60 over 80 degree curvature, and a 54 degree curvative toward her internal cavity - that he was fearful it would eventually lead to heart and lung compromise.
After much mental anguish, the surgery date was scheduled. January of 2012. Leading up to that, she had MRIs, CT scans, bone density scans and she donated her own blood because she would lose quite a bit during surgery and they needed it for transfusions. The day before surgery she went in to have a picc line placed for her morphine pump.
I was told at that visit, that she will be placed in a stabilizing halo to keep the pressure off of her eye sockets. Her surgery was to be a 8-9 hour surgery and blindness was a real possibility, since this surgery takes place with the patient face down.
The day of the surgery, she was hopeful and trying to remain calm. The nurse came in as they were getting ready to wheel her back and they gave her something via her IV to take the edge off. It was so very hard to see them wheel her away after I kissed her and told her I loved her.
The nurse kept us all updated, and since my daughter wanted pictures of the actual surgery, the nurse came and showed us some of the digital pics she had taken. I didn't dare look at them then. I was an emotional wreck on the inside. On the outside I guess I looked calm, but I was wracked with worry.
Once she came out of surgery, her surgeon said that they wound up stapling her closed because the spinal monitoring indicated that she was losing feeling in her legs, so they had to hurry and get her on her back.
It's something to see... your child with metal rods, 23 screws and various other hardware holding her vertebrae in place while the bone grafts hardened over the next 12 months.
The first night in the PICU was rough. She threw up and because she couldn't bend forward, the nurses had to roll her like a log to one side. It was awful.
The following day all the anesthetic had finally worn off and she had her morphine pump going. She was as pale as a ghost, and kept pushing the button over and over.. she asked me a few times over the next couple of days, "Mommy.. am I going to die? I think I just need to die. I hurt so much."
That was the single most heart wrenching thing I could ever hear coming from my child's lips. My mother hugged me and I had to leave... I couldn't keep it together any longer.
After a week at Children's Mercy, she was released home. I had a panic attack - how was I going to care for this child when she's still in so much pain? She was on a cocktail that would knock most full grown adults on their ass... and she was 13!
She had to take Oxycontin, Valium, Percoset, a pill for nausea and something to loosen her bowels. She couldn't hold anything down for days, and every two hours I had to go in and roll her log style from side to back to side again.
I am amazed at my daughter's will. She is much stronger than I was during this time. She was determined to do what she needed to do to recover.
I am so proud of her. You would never know by looking at her now, where she was that last week in January and for the two months following.
It was a miracle that I am so glad turned out well.
My heart sank as I knew immediately what it was.
Scoliosis.
Odd thing, you hear about scoliosis all throughout grade school, when the students go to the school nurse and do the 'bend over and touch your toes' routine. For some reason however, you never think it will affect your child.
After seeing three specialists in spinal deformity, a nightmare was our reality. She needed spinal fusion surgery. The orthopedic surgeon at Children's Mercy in Missouri said that it wasn't a question of if she'd need the surgery - it was when.
Her spine was so twisted - a 60 over 80 degree curvature, and a 54 degree curvative toward her internal cavity - that he was fearful it would eventually lead to heart and lung compromise.
After much mental anguish, the surgery date was scheduled. January of 2012. Leading up to that, she had MRIs, CT scans, bone density scans and she donated her own blood because she would lose quite a bit during surgery and they needed it for transfusions. The day before surgery she went in to have a picc line placed for her morphine pump.
I was told at that visit, that she will be placed in a stabilizing halo to keep the pressure off of her eye sockets. Her surgery was to be a 8-9 hour surgery and blindness was a real possibility, since this surgery takes place with the patient face down.
The day of the surgery, she was hopeful and trying to remain calm. The nurse came in as they were getting ready to wheel her back and they gave her something via her IV to take the edge off. It was so very hard to see them wheel her away after I kissed her and told her I loved her.
The nurse kept us all updated, and since my daughter wanted pictures of the actual surgery, the nurse came and showed us some of the digital pics she had taken. I didn't dare look at them then. I was an emotional wreck on the inside. On the outside I guess I looked calm, but I was wracked with worry.
Once she came out of surgery, her surgeon said that they wound up stapling her closed because the spinal monitoring indicated that she was losing feeling in her legs, so they had to hurry and get her on her back.
It's something to see... your child with metal rods, 23 screws and various other hardware holding her vertebrae in place while the bone grafts hardened over the next 12 months.
The first night in the PICU was rough. She threw up and because she couldn't bend forward, the nurses had to roll her like a log to one side. It was awful.
The following day all the anesthetic had finally worn off and she had her morphine pump going. She was as pale as a ghost, and kept pushing the button over and over.. she asked me a few times over the next couple of days, "Mommy.. am I going to die? I think I just need to die. I hurt so much."
That was the single most heart wrenching thing I could ever hear coming from my child's lips. My mother hugged me and I had to leave... I couldn't keep it together any longer.
After a week at Children's Mercy, she was released home. I had a panic attack - how was I going to care for this child when she's still in so much pain? She was on a cocktail that would knock most full grown adults on their ass... and she was 13!
She had to take Oxycontin, Valium, Percoset, a pill for nausea and something to loosen her bowels. She couldn't hold anything down for days, and every two hours I had to go in and roll her log style from side to back to side again.
I am amazed at my daughter's will. She is much stronger than I was during this time. She was determined to do what she needed to do to recover.
I am so proud of her. You would never know by looking at her now, where she was that last week in January and for the two months following.
It was a miracle that I am so glad turned out well.
