"We have bubble gum, cherry, watermelon, root beer, grape.."
"Cherry."
The anesthesiologist reminded me of Roald Dahl's The BFG. It wasn't just because I was nine and terrified that morning of my own shadow, but he spoke to me with such kindness and calm as he wielded my "sleep mask" and the little tubes of "sleep flavors," that I half thought this was all some kind of magical realm. All I knew was that by the end of the day I would have a piece of metal in my leg, kids at school would no longer make fun of me for having two knees, my tibia would be straightened, and I might even come out of the procedure a few inches taller!
Earlier in the week my parents had gone with me to school and asked to speak with my third grade teacher and classroom aide in private. In hushed tones outside in the hall my parents explained to them that I would be missing a week of school.
"The doctor will break her leg in three pieces and put a rod through. This will help strengthen her leg, make it straighter, and help her walk better." I remember my parents were trying to find some balance between describing the surgery matter-of-factly and relaying how this would be quite the undertaking. At the time I was also out there in the hall too, but I wasn't paying attention to the grown-up talk. I was still young enough to let my parents shoulder the entire burden of my first major operation, my wheelchair was turned away from the hushed tones and I was, as usual, spacing out while looking out the window outside. It was then that my third grade teacher, Mrs. Bond (who passed away two years later) looked down at me,
"How are you doing?"
"I'm fine." I recall saying as I looked up into her face. The operation hadn't happened yet! What did she expect me to say?
"No, you're not fine sweetie. This sounds painful!" I remember shrugging and pushing myself back inside the classroom.
I sat behind the pulled curtain in my circus animal covered hospital-distributed size S gown. The outfit also came with fuzzy blue socks with white grips on the soles, I put them on my hands and pretended that they were puppets.
"Hi, I'm here to put an 'x' on the leg that we will not be operating on. This is just to help Dr. Shapiro and it will be gone by the time you wake up okay?" She took out a felt tip marker and made a small purple 'x' on my right tibia.
"So this is the leg that the operation will be done on right? Do you know what they're going to do today?" It was the morning of The Big Day. I had woken up before the sun and driven in silence to the hospital with my dad, listening to Magic 106.7's Boston's #1 soft rock station the whole way. Suddenly I didn't feel fine and although I knew exactly what they were going to do, I couldn't get the words out. The entire procedure slipped away from me and cowered stuck somewhere in the middle of my throat.
"Have you ever had a shish kabob before? It's basically a very thin stick that you put all kinds of food like vegetables and sausages onto. You put them on the same way you toast marshmallows over a fire. That's what will happen to your tibia, this bone right here -" She then pointed at my left tibia. My second knee, as kids in school called it, was bowed to almost a right angle. It didn't hurt me unless I tried putting my braces on and the plastic piece that was supposed to go over that area never sat right.
At the time I couldn't imagine what my tibia would look like straight. My right tibia was also bowed, but not to that degree (though that would change as I gt older). Would my doctor have to stretch my skin too to make room for my longer leg? Would the rod set off metal detectors? Would my leg feel heavier with it? How much taller would I be after it was done?
"Alrighty, so today's the day right? The Big Day is here!" Dr. Shapiro, my orthopedic since birth, a bit late as usual, had shown up. He brought with him a team of other doctors and right away my mother got nervous,
"You'll be the one doing the surgery right?" I didn't think she could look any more nervous but she her skin tone went to an even brighter shade of white.
"Yes. I will be doing the actual cutting, maneuvering, and placement of the rod. These guys will be helping out and observing." Dr. Shapiro nodded and smiled at me, he was forever smiling.
"So I have the x-rays here of the actual area that we will be operating on and..." he then dove into a hodgepodge of medical terminology that zipped right by me. His voice dropped down a bit and he gestured to the team of doctors that hovered around him, their ears and eyes clinging to his every word like they were some magic spells.
"...Alright so I'm going to get changed and then the nurse will take wheel the bed into the operating room. So I will see you soon and we will keep mom and dad updated as the procedure goes on. Okay?"
"Okay" I whispered, giving a microscopic nod. He said it with such flourish that I began to wonder exactly how many rodding surgeries he had already performed on other kids like me. I also wondered why things like confidence couldn’t be contagious; after all, there certainly seemed enough of it to go around amongst the team of doctors who stood in scrubs and hair nets.
The anesthesiologist gave me my sleeping mask just before the nurses came to roll my bed to the operating room. As we rolled down the hall and into the elevator to go to the operating floor my body went cold. I tucked my legs in towards me and my eyes darted everywhere, suddenly it didn’t matter how many times I had already been at Children’s Hospital – I didn’t know where I was, and even more so I didn’t want to be there.
“So how do you like the third grade, Sandy?” The nurse asked.
“It’s fun.”
“I read in your files that you like to read a lot and that you want to be an author when you grow up? Who’s your favorite writer?”
“Roald Dahl, I like his book Matilda.” Somewhere during the conversation about my favorite books and the adventures of Ramona the Brave we had arrived in the operating room. I don’t remember much about that first operating room other than everything in it seemed metallic.
The nurse carried me over to the operating table and introduced me to some of her other “friends who would be helping out;” smiling eyes peeked over operating masks and gloved hands waved at me; I gave a nervous smile back as I lay down. Sticky pads that would track my heart beat and other vitals were stuck onto my chest and The BFG anesthesiologist came in again, he sat near the top of my head like my dentist.
“Alright so I have your cherry flavored sleepy gas all ready. I’m going to put the mask over your mouth and nose and all you need to do is breathe normally for me okay?” It all seemed simple enough so I nodded.
Even as I write this the memories of the “sleepy gas” makes the back corners of my jaws pinch, my throat gets thick with queasiness and I have already tried swallowing the memories away about twenty times. As he placed the mask over my face a light cherry scent filled my nostrils,
“You’re doing great, just breathe in and out for me” I did for a few breaths and then my world seemed to get sucked into a vacuum that spun at the same time as I felt like I was sinking away.
“I’m going to turn the machine on now and the cherry will get stronger - it will make you feel very tired and sleepy, but don’t try to fight it okay?” His large eyes searched my face letting me know that this sci-fi vortex that I thought I was flying through was perfectly safe. The buzzing noise suddenly felt fuzzy to me, was it even possible for sounds to feel fuzzy? I felt light headed, and soon couldn’t feel the rest of my body, the nurse on the other side who was gently rubbing my arm, or the mask on my face – it was like the only parts of me that existed were the breaths I was taking.
“…you’re doing great Sandy..”
I woke up incredibly thirsty. My parents were sitting in chairs covered in blankets next to where I lay and all I mustered a very dry and groggy, “water..”
“The nurse says you need to drink this slowly and in small amounts, okay? I will help you.” My mother approached me with a cup of water that had an extremely long bendy straw dangling from it; I nudged my head and chin towards it and, of course, didn’t listen to anything my mom had just said. Never had water tasted so good! It was like my life was being restored with each gulp I sucked down, I drank like I had just run a marathon!
“Slowly!” Then my mom figured out that she could pinch the straw between her fingers and drastically decreased not only the amount of water I was inhaling but the pace as well. From out of nowhere though my stomach didn’t like the waterfall that I had just ambushed it with, I vomited. Water came hurling back up my throat like raucous ocean waves in a storm and splattered on the floor; as the nurses came hurrying in to clean up the mess I turned my head to the other side and went back to sleep feeling much more satisfied.
Then I woke up for the second time. This time when I woke up Dr. Shapiro was in the room and seemed to be discussing two x-rays while talking to my parents. This time around I also noticed the weight of the light blue cast on my left leg. I also felt the slow groggy awakening of the pain in my leg as well; confused and out of sorts I began to cry.
“Oh you’re awake! The surgery went well, and if you’re feeling some discomfort there is a button that you can press. It sends the pain medication into your IV” Dr. Shapiro told me. I reached over to the small button and pressed it several times in frantic repetition, for the remainder of that first day the button never left my hand.
--
So, that’s the story of my first rodding operation. The operation went well and my tibia was broken into three pieces, as I was explained later on. Two years later I grew and that first rod actually migrated from the surgical area and out of my skin! It would not be until I was in my senior year of high school that I would have another rod surgery, that time it would be for my right tibia. And then four years later during my senior year of college (shortly after graduation), they would need to fix the rod in my right tibia – replacing it with a new rod, a metal plate, screws, and some bone paste.
Shish Kabobing Bones:
There are a bunch of details I left out in my re-telling of my first operation in an attempt to keep it to the essentials. But in this section I will tell you about the silver linings that made helped my first operation along --
- The day before the operation my parents allowed me to eat all my favorite foods. For the 9 year old me that included: white rice & ketchup, pizza, string cheese, Gusher snacks, fruit roll up, and endless glasses of milk. It also helped that my operation was very early in the morning, this way I didn't have to go hungry for too long until my operation
- My day-to-day routine didn't change during the days leading up to the operation. I still went to school, hung out with my friends, still had my music lessons etc. It helped my psychological calm about managing my first big operation. This isn't to say that my parents didn't still talk to me about what would happen, or I didn't ask them a hundred questions, but the general consensus was that life would continue before and after the operation
- Weeks before the operation my parents had made appointments with a physical therapist. She specialized in post-op assistance and arranged for me to have rent a reclining wheelchair, and other adaptive equipment that would help me during my time rehabbing with a huge cast on my leg. After the operation she came to my hospital room and showed my parents how to help transfer me to my wheelchair, to the toilet, and talked about different ways to help me in the shower
- I was fortunate enough to have my grandparents live not far from Children's Hospital; this way during the day when my parents had to take care of my older brother (send him off to school and his own activities), they came and stayed with me. Then at night my parents would come back and one of them one sleep with in the room with me
- Because many OI'ers have issues with their lung capacity, its important to keep monitoring this part of you before and after the operation. I remember needing to go through a battery of tests before the operation with my pulmonary doctor to ensure that I was clear to go under anesthesia. After the operation there was a doctor who would do breathing exercises with me, and help me to ween off the oxygen mask that my lungs had become dependent on during the long operation
- Staying in the hospital over night is tough. For whatever reason pain is always worse at this time, nurses keep waking you to take your vitals, and you can never get into a comfortable enough position. What helped me get through the night was actually being as active as I could during the day. I would try not to nap, play video games in the play room, hang out with the hospital volunteers, or read the Get Well cards my classmates sent to me. This way by the time night fall did arrive my healing body would be exhausted and I would just pass out
