Defeating Scoliosis,
Living With Autism - Part Two

A bright light is on me inside the operating room. Everyone is moving fast, like busy ants in an ant farm. They're fussing over me. I am a movie star!

My head feels woozy. It's hard to keep my eyes open. There's a strange looking table near me. Something about this table worries me. "What's that, Crystal?" "Oh, it's just a table." "Is it for me?"

Crystal looks like an astronaut. She's wearing a white spacesuit, a cap and a mask on her face. Crystal isn't answering my questions. "Are they gonna put screws in my back, make me a monster?" "No, they're going to use special tools." "What kind of special tools?" "Ask Dr. Roye."

Dr. Roye isn't wearing a mask. He's talking to a lady sitting in front of a computer. He walks over to me, but says something to a lady doctor standing behind my head. It's getting harder for me to talk. I'm so sleepy. But I want to know what they will do to me in here.

"Hey, Dr. Roye? Are you gonna use a knife on my back?" "No. We use scalpels." "Are you gonna put screws in my back, make me a machine? A robot?" "Yes, I am going to use screws."

Oh, my God! "I don't know about that screwdriver, Dr. Roye. He pats my leg and says, "I won't use one then."

A mask is put over my nose. It smells funny. I don't want it on me and I fight to take it off. Someone takes the mask off my face. There's something thick and white running down my IV.

School Scoliosis Screening Guidelines

The purpose of scoliosis screening is to identify students with spinal deformities that may cause impairment of the body's range of motion and endurance, and in advanced stages, back pain and functions of other parts of the body. In New York State, Education Law, Article 19, Section 905 and the Regulations of the Commissioner of Education, Sections 136.1 and 136.3, require schools to provide scoliosis screening at least once in each school year for all students in grades 5 through 9 (age 8-16). New York State Education Department, Statewide School Services Center
After months of stressful anticipation, and careful planning, arrangements for medical transportation, durable medical equipment, home care, a personal care aide, home schooling and related services, have all fallen into place. And now the big event is about to happen on schedule.

Dr. Roye pulls me and Marlon aside to talk about the operation. He says thought was given, along with his colleagues on where the spinal fusion should end, vertebrae L1 or L2. He feels L2 is clinically better to stop the compensatory curve from progressing, and allows more lumbar spine vertebrae, in the small chance there's a need for surgery as an adult.

Just a few minutes ago, we met the anesthesiologist and her assistant. An IV line is placed into MJ's right arm and another into his left wrist. A shot of valium is injected through the IV to keep him calm. Heart monitor leads which look like white round stickers are placed in several areas onto his body. Due to sensory issues in autism, MJ can tolerate very little touch.

Special permission is given so that instead of his parents, Crystal can go inside the operating room with MJ as he wants her to. Finally, they're ready to wheel MJ into the OR. "May I kiss you, MJ?" I ask. "No, just a hug." I hug him gently, not wanting to let him go. But it's his dad's turn, so I must. I am upbeat and excited. "God bless you, MJ. See you soon!"

A short while later, I'm surprised to see Crystal with Dr. Roye out of the OR walking towards us. Crystal appears a bit stunned. Dr. Roye says easily, "MJ's asleep. See you in 6 or 7 hours. I'll come down to talk to you. He should be in the Pediatric Intensive Care Unit overnight, and in his room tomorrow. I'll take good care of him." His words reassure me. I do trust this physician with our son. I take both his hands. "God bless you and your team, Dr. Roye."

Crystal is quiet. Maybe she shouldn't have gone inside with MJ. "What happened in there?" we ask. Marlon, Crystal and I move closer to one another and talk quietly. Our circle is in the place where MJ had been just a few minutes ago. She says that you can tell the OR is prepared for a major scale surgery, and describes it for us. She tells us what MJ did and said. Crystal is bothered by Dr. Roye's honesty in answering his questions. She worries that MJ fell asleep afraid. No longer excited, no one in our huddle wants to leave him. A nurse comes over and gently reminds us that the family waiting area is on the second floor. I whisper, "God he is yours. He is in your hands."

Inside the elevator down, no one speaks as we leave the third floor. Until a group of residents get on, talking enthusiastically about their day. Back in the waiting area, we find an empty spot among several other family members and friends, leaving some open space between chairs for privacy.

The hours go by slowly. Whenever I think of MJ upstairs, and all that could possibly go wrong, such as neurological damage, blood loss, infection and failure of the bones to fuse properly, low flames of panic flare up inside me, threatening to sear my soul. In order to keep myself from having a panic attack, I take a special note out of my pocket and read it over and over again.

"Try to remember that God has great plans for MJ. And that He will hold him in His arms, and guide his surgeon's hands. He will provide the strength that both MJ and your family will need for the recovery."

The note is from my young friend, Stephanie. I met her online at Yahoo Answers during her recovery from a successful scoliosis surgery.

Marlon is reading a magazine. Crystal is playing sudoku. Finding it impossible to concentrate, sometimes I watch NY1 on TV or the other families around me. Like us, each group of family and friends are doing various things to pass the time away. I envy them. I wish someone from our extended family were here to support us. But they're not.

As morning becomes afternoon and turns into evening, the number of groups in the waiting area grow smaller. Whenever a surgeon approaches a family to report about their loved one, we all listen discreetly, praying for our news to be good news too.

After waiting nearly seven hours, we begin to get edgy and nervous. "What time did MJ go into OR?" "Around 11 o'clock." "Okay. He should be out by 6 o'clock, 7 the latest."

Someone is calling my name. "MJ! MJ wake up! Wiggle your toes for me." Something pointy is scraping up and down my foot. "Can you feel this?" I nod my head. Yes, I can feel it. My back! What did they do to my back? I can't believe they did this to me. My face feels funny. I can hardly open my eyes. My lips are sticking together.

Finally, a surgeon still dressed in blue OR scrubs, walks towards us. I follow him with squinted eyes to study his face. Yes, it's Dr. Roye! He sees us too, and smiles. "MJ is doing fine. There were no complications and no need for a blood transfusion. His surgery is successful with 100% correction. The thoracic curve was so flexible and easy to correct I decided to fuse at L1 instead of L2. He's awake and will go directly from OR to PICU. If he does well he'll be there for a day or two. I shot a big dose of medicine into his spinal cord so he didn't wake up in pain." We are ecstatic! "May I give you a big hug?"

We must wait a while longer before MJ is out of OR and settled into PICU also on the third floor. When we walk into the room, MJ is lying on his left side, hitting the side of his head gently with his fist, crying softly, and whispering to himself about his predicament.

Seeing MJ for the first time in PICU is a flood of relief, yet it's heartbreaking. MJ's head is large and his entire face is awfully swollen. Marlon and Crystal are visibly upset to see him this way. Stephanie warned me that facial swelling is common after a long surgery.

Although I am prepared to see his head and face so puffed-up, I am unprepared for how small and vulnerable he is now. MJ has an IV bottle and other lines attached to him. He is hooked up to machines that regularly record his vital signs. There's a drainage tube leading out of the incision from his back into a plastic container, already nearly half filled with blood. A catheter is inserted for him to relieve himself.

Stephanie once shared with me, "The hardest thing for me to get used to was my loss of basic skills. Walking, standing, sitting, lying down, and rolling over were all things I had to learn again."

Mommy and daddy found me! I'm so happy they're here. "My back! What did they do to my back?" Crystal walks over to me and says, "Dr. Roye fixed it. You did it MJ. You defeated scoliosis!"

"My back! I have a giant spider on my back. It's killing me."

© Copyright 2007-2009 – Wanda Brown. All Rights Reserved

Article continues... Part Three

Defeating Scoliosis, Living With Autism - Part 3

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