Perfectly Imperfecta

"These saltines are STUPID!" I screamed. I clutched the packet of crackers and zinged it like a frisbee across the room. Supposedly I hit the nurse trying to get me to eat. I say supposedly because I have no recollection of any of this happening. That part of the story all comes from friends who visited after my operation.

The surgery had gone on for at least 6 hours, far longer than what my orthopedic surgeon had initially thought. My left tibia required re-rodding, several screws, a metal plate, and some bone glue-paste. Needless to say a lot had happened to my body and when I woke up I was less than pleasant. The anesthetic had yet to wear off, the anti-nausea medicine had yet to kick-in, after the hundredth "you're in the recovery room now.." I still did not understand where I was... and well, I felt like a disaster. I felt like a hurricane that was almost about to die out -- with a few more hours of rain to pour out and a couple more houses in my path to destroy. Angry, irritable, uncomfortable, and feverish are among a few of the words that might describe my state of being when I first wake up from surgery.

With that said though I always enjoy having visitors! Aside from the fact that I rely on THEM to tell me what the hell is going on, having familiar faces aside from that of the residents, nurses, and hospital volunteers is always comforting. Aside from feeling physically in pain or uncomfortable, I am usually also angry because I'm thinking it's the STUPID O.I.'s fault that I am even here to begin with! Even if I don't ever actually utter those words, you can read them clear as day in the frowns and scowl lines in my forehead and face.

"Hey, I'm going to pick up some McDonald's what do you want?"

"Um I don't think I can eat that stuff yet." I replied glumly.

"I don't care. I'm going to smuggle it in. What do you want? A cheeseburger? Fries? Milkshake?" My friend M was on his way to visit, and if there's one thing you need to know about M it's that having fun always comes first... what other people think doesn't even make it on his list of priorities. When he arrives it is nearly evening, my family had gone home and even I could tell that visiting hours were definitely over.

"How did you get in here?"

"I said I was your uncle." I smiled and before he placed the bag of grease-infested take-out next to me I could already smell my appetite returning to the land-of-the-living.

"Oh and here.. My mother made these cookies for you." Had any nurse or doctor seen the mound of junk food in front of me I probably would have been re-admitted for surgery, only this time to unclog my cardiac veins! I pulled myself up to a sitting position and looked dizzily at the array before me.

"Thanks, wow I don't .. even know... what I'm supposed to do with all of this right now" I murmured.

For the rest of that evening M managed to get me out of the hospital bed and into a wheelchair. We raced down the halls, sang the YMCA song (by ourselves) at the patient entertainment center, and I watched as he failed miserably at flirting with the nurses. By the time he had to go I was exhausted and didn't even need any pain medication to help me fall asleep.

Sometimes the best medicine IS really laughing and there's no other time I have known this to be true than having friends come visit post-op!

Tips for Post-Op Visiting:

When I was younger (in elementary and middle school) my friends didn't visit me at the hospital; instead it was more appropriate for them to send cards as a class! Or visit me at home when I was less tangled up in wires/bedridden
Some hospitals allow visitors to send emails to patients, or make direct phone calls into the room. Be sure to check!
Be calm and your usual self. Sometimes it makes it difficult for the patient (who may be under a lot of pain medication..) to keep up with overly excited or enthused visitors
You don't need to go over the top with gifts/toys/distractions. Many times I have found that just sitting and watching the ridiculous daytime television shows with a friend is just as good!
Despite what I wrote above, be sure to check before bringing in food for the patient. You also might not know about allergies that other patients on the ward may have
Always, always, respect the nurse / doctor / resident on the patient's case! As the professional medical staff they need access to the patient and to be able to provide the best care -- sometimes this might mean clearing the room or other privacy
Try to restrain yourself from asking a million and one questions about what's going on and when will you be out of the hospital! I know that this can be tough but it's always best to go with what the patient is willing to volunteer or look to a medical person on the case
Ask before you re-arrange blankets, pillows, or even the room. A lot of times the furniture in the room is set-up in a certain way for easy transferring or for other medical reasons
Most of the time when people are in the hospital they are TIRED. It's helpful to pick-up on hints when a person you are visiting seems exhausted or is beginning to yawn a lot... just ask if they need to rest or if you should leave.
Just hang out and keep the patient company! That's really all what this boils down to -- I'm sure that the patient will always be appreciative of your efforts and the time you took to stop by! =)

Andrew, my younger brother, would later tell me my mother thought he was annoying me yet again when she heard my screams. “But I wasn’t doing anything. I was just sitting on the kitchen floor flipping through the dictionary – you know the yellow one? I was looking at all the pictures.”

Meanwhile in my bedroom I was face down on the floor with a pool of blood around my head, my wheelchair tipped forward onto me, and both of my legs had snapped in half. The events of this incident are choppy in my memory, like some mind-twist of a horror film the scenes cut in and out of my mind. When I really think about it I remember the fall (I can see it happening to myself): the front wheels of my wheelchair had hit something and I was lurched forward, still seat belted in, but by the time I had hit the floor my wheelchair was at a forward tilt two feet behind where I was sprawled. I screamed. I don’t remember who I was screaming for or what I screamed, but I made the loudest noise I could possibly muster; it wasn’t from the pain of my two broken legs, at that moment the pain hadn’t even registered to me yet, I screamed because I was totally freaked out by the endless amounts of blood that poured out of me. There was so much of it!

The next thing I remember my mother had rushed in my room and made a sickening groaning noise. Up until that point I had never had a fracture that involved THAT much blood (when my rod migrated and protruded from my skin there was just a little trickle); what happened after my mother came in are now just a blur. Suddenly I was on a pillow on her lap and my older brother had called 911. I could hear him just outside my room giving the emergency dispatcher the information “my sister she has Osteogenesis imperfecta, and she just fell from her wheelchair. There is a lot of blood everywhere…it’s a brittle bones disease.” Next I remember he was shouting at my mother “Mom! Mom! They said don’t move her spine or her neck, it might be broken!” But at that point I had recovered a bit from the impact of the fall. The pain from my fractured legs had begun to settle in, all I knew was that some part of my legs had broken – so searing and encompassing was the sharpness that I couldn’t pin point an exact location of the fractures. I also knew that no other part of my body was broken, or at least that my back and my neck were fine:

“No. My neck and my back are fine. It’s my legs. I broke both of my legs!” I hollered back out. It seemed only a few minutes while we waited for the ambulance to come. During that time I had never seen my mother look so horrified and confused while she had me on her lap, not even touching me because she was afraid of what other damage she might discover or cause.

When the emergency medical crew arrived they first cleaned up the blood and then shone a flashlight into my mouth and up my nose. “Where did all of this blood come from? Well she has braces on her teeth so maybe the metal cut her mouth when she fell? She’s not bleeding anymore though.”

“She was born with OI, it means she has brittle bones, it’s a very rare condition. This has never happened before. But she says her legs are broken, she knows when something is broken” my mother told them.

It was clear to me that my mother was being fiercely protective of me, not letting them touch or move me at all. The emergency crew moved around my room slowly, at that point they were all trying to figure out how to move me from my mother’s lap to the stretcher.

“This is going to be a challenge guys, we’ve never come across this before.”

I don’t know whose idea it was but someone had contacted Dr. Shapiro, my orthopedic and surgeon. The phone was handed to one of the emergency personnel and I could imagine my doctor, who has known me since birth, catching him up on the fast facts of O.I.

“Alright guys, the doc says to not apply any pressure anywhere. We can’t use the head or neck stabilizer on her; he says to just use medical tape instead of straps or buckles. We can slide the board underneath the pillow that she is on now and then put that on top of the stretcher – he says we absolutely cannot touch her. The doc is going to be waiting for us in the emergency room at Children’s in Boston… alright so let’s do this slowly and steadily.”

At this point I don’t remember every lying so still or stiff my entire life. I was afraid to move, to breathe, to know what would happen and all I wanted was for Dr. Shapiro to make me better. I wanted to skip all of this stuff and get to the point where I could just pass out on the hospital table as the heat of the fiber glass cast was cooling against me.

When we got to the emergency room at Children’s Dr. Shapiro trusted no one else to touch me but him. He took all of the tape off of my head and asked me what was hurting the most, he then ordered an x-ray machine to be sent into the room and took the pictures himself. He gently touched my hip area and when I whined he quickly backed off “Okay so it looks like there’s some soreness to the pelvic area so we should get a few pictures of that too.” After he looked at the x-rays it was confirmed that both of my femurs had broken and there was also some damage to my pelvic bone, my head had severe bruising and he when I didn’t cry out as he gently touched the bones in my face he knew all he had to do was focus on the lower half of my body. I was put under general anesthesia and when I woke up two bulky light blue casts were on my legs; I remember feeling the relief that it was all over now, the crisis had subsided and while usually I would be excited to get back to school – this time I just closed my eyes and fell into a deep sleep.

911 Fractures:

The fast facts of telling someone in an emergency setting about O.I.: it means she has brittle bones, there have been numerous fracture before, there is a specific doctor and hospital that she always goes to. This allows strangers to the condition to know what it is they are dealing with and where the end destination for them is
If possible it's important to keep awake. During the wait for the ambulance and on the ride to the hospital I remember that everyone was trying to keep me awake and conscious
In this incident I was in middle school and old enough to know what was broken, but this might not always be the case for younger children. Use your best judgment because you probably know the child the best! And if you're unsure it is probably best to have them be transported to a hospital right away so that x-rays can provide the confirmation for you
I was lucky that my doctor was around at this time and I would advise the emergency team handling the situation to speak directly with the orthopedic doctor. Otherwise, now you know to that added pressure is not the way to go and should be avoided at all costs when transporting someone with O.I. Use tape!
It was helpful that my family and the emergency crew remained calm. I probably would have been in far more discomfort and unable to focus on where I was most injured
Listen to the person who is injured
I don't know how my mother got me from being face down on the ground to being on my back on a pillow, but she did it - and the best thing about all of that is that I don't remember the transition so I don't remember how much that probably hurt
If there was a traumatic fall of some kind it will probably take a few minutes for shock to subside and for the person to connect with their body again - trust that the injured person will tell you where it hurts when the time comes!

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