Showing posts with label OI rodding surgery. Show all posts

Deciding whether or not to do surgery requires a lot more than just the puzzle pieces doctors can offer. There's this whole other side to what goes into patient decisions based on cultural values, religious beliefs, and even family dynamics. Unlike the medical piece these other aspects don't usually have as quantifiable an existence. You can't really measure how much religious belief should sway parents to go ahead with surgery during certain religious holidays. You can't exactly pin point how much cultural value is going to influence the kinds of foods a patient can have after surgery, or who is present in the operating room during the surgery. I know that these other variables might not rank as high on the 'critical' scale when considering an operation, but nevertheless when a medical team is working with a patient and family members, these undoubtedly need to be factored into their over all care delivery. 

Here's the scene: I am in my senior year of high school, there are only five more months until I graduate. At that point I will no longer consider myself a child, I will be done with high school, I will think: to hell with how anyone else sees me. I will be moving on to college, eager to jump head first into young adulthood. But until that point I will be rushing ahead, antsy with anticipation of being treated like an adult. Excited to make my own decisions, without having to actually make any real decisions yet. That is until I am confronted with the question of a rod surgery in my tibia. Here I am trying to talk it out -  as an almost-adult  - with my parents.

(Please note: what is in bold italics are my own thoughts. These are the things that I never actually said to my parents during this conversation).

 Parentals: Sandy what is the point of this surgery? Will you be using your walker on campus in college? Probably not, right? You won't still be getting P.T. services during school hours, right?

Me: But Dr. S said it's a good idea! He said that the bone is terribly bowed. That it will be better, long term, for it to be straightened.

Parentals: Okay so he says it's a good idea. But what do you think? Do you think this is a good idea? What was the point of getting your other leg rodded when you were younger? It was so that you could walk on it more. And now you don't walk as much, and in college you probably won't be walking on it.

Me: "Probably not walking on it" is not a good enough reason to not have the operation. "Probably not" risks losing too much in the future, too much potential that you might not see for me - but maybe I see it for myself. Well, maybe I will walk on it in the future. What about then?

Parentals: It's going to be a lot of pain and recovery time for something that you're not even certain will benefit you in the future. Do you really want to spend your summer before college rehabbing? You want to spend it in a cast for 3 months?

Me: You think I don't know the risks and sacrifices I'm making so that I can walk better? You think I don't know?! I'm not stupid, of course I know I'll be in a cast and there will be lots of pain. This obviously isn't my first rod surgery, and obviously this isn't going to be my first broken bone. I know what I'm doing.

Parentals: You're a teenager and you think you know everything --

Me: Because I DO when it comes to this!! You guys are the ones who know nothing when it comes to this, because You Do Not Have O.I. D'uh!

Parentals: Does it hurt you right now? Is that why you want to do the surgery?

Me: I stopped telling you when my bones hurt a long time ago. If it wasn't an obvious fracture I've long stopped telling you so that you wouldn't worry. I'm not about to start that again. Only sometimes, only a little, off and on. Only because the bone is so bowed, every few weeks or so there are little cracks in the bone. That's why Dr. S thinks it'll help the bone be stronger, so it won't break. But the truth is yes, it does ache and it goes numb at night in ways that freak me out and keep me up at night. 

Eventually, and after many days of this aggravating and frustrating back and forth - my parents became okay with my decision to go ahead with the operation. I was not yet a legal adult, still had to have parental permission, and while it was endlessly annoying for me to have this conversation: I have immense respect for my parents because they allowed this talk to happen. It is necessary, because the fact of the matter is that no one will always agree with medical decisions regardless of who it comes from (the patient, the nurse, the doctor, the parents, the physical therapist etc). But it is necessary regardless of who it comes from, that that individual is able to provide reason and clear understanding of what making a medical decision means for the present and future.
For adults the above may be obvious. But for young people, particularly those who are not yet legally able to call the shots - but clearly able to have a say in what happens to their body, this is another example of managing their own healthcare. Making healthcare decisions big or small can be frightening, talking it out with those who know you best and respect you makes it a little easier.

My legs were stronger than they had ever been, I hadn't fractured my tibias in years, and aside from lugging on leg braces - walking was effortless for me. I could be in my leg braces and walker for most of the school day, no complaints.

For a few seconds I believe the bed has swallowed my entire body, leaving only my eyeballs. At first I can feel nothing else, and my brain seems to still be wiping the dredges of the anesthesia off - for the time being it can only send a few bursts of signals to my eyes. All I see are the glaringly obnoxious fluorescent lights above, then the curtain divider, and then from the corner of my eyes the machines with all of its wires that are all heading in my direction.
Meanwhile the room has begun a slow counterclockwise tumble: the ceiling melts into the wall, the fluorescent lights look like they're about to fall on to me and then there it is -- the tips of my fingers brush past the top of the cast. The familiar dimpled ridge texture of the fiberglass cast sends my brain shooting down memory lane, and then it all comes back to me: a rod surgery on my left tibia.

I yak up stomach bile as I always do after operations. It's the final signal that says: okay your body is awake now. The nurse holds out a small cup of water for me as I hungrily gulp it down, like it's some kind of mirage that might disappear on me any second.
It's sometime between when I first remember what has happened and the time I am given my first sips of water that the pain hits.
"It was a long surgery, Sandy. Far longer than anyone expected. It lasted 6 hours and Dr. Shapiro had to make 4 breaks into the bones." The nurse tells me.
Still not really able to form complete thoughts yet, I make a sound that is something between a groan and a cry. My hands grasp at the fiberglass cast, fingers scratching at a leg that only that morning I had been able to touch the skin of. Now it lay in several pieces, with all kinds of hardware screwed into the bone - that thought alone made me squirm.
"Don't be afraid to push the pain button, okay?" She put a small buzzer into my right hand, the one that wasn't already swamped with I.V.'s swarming about. I nodded my head, half rolling my eyes to tell her that I already know all too well what the pain button does.

After my vitals are checked again, and a room upstairs has opened up I am rolled to the 9th floor in a room that is across from the nurse's station. It's the room I am always in after rod surgeries, a single room to myself with the border of animal decorations going around the walls. The first night after surgery is always the worst for me. The throb of pain ebbs and flows all throughout the night, the morphine makes me frantically itchy, and my dreams are a mix of lucid reality with the backdrop of pain medication. In short: I have no idea what is going on.
Several times an hour various nurses will come and check on my vitals. But the blood pressure stands that give my arm a gentle hug at midnight, then 1AM, 2AM, 3AM.. has appeared to me as various morphed alien-octopus creatures with tentacles that squeeze for a bit then get ripped off.

In the dim of the night light, and mixed with the neon glow of the machines I could tell he was wearing a large blue cookie monster t-shirt. Must be one of the perks of working at Children's Hospital I thought. Rarely do I remember anything about my stays as an inpatient, especially during the first night after an operation - but for whatever reason the guy checking my vitals that night made an impression. He was going about his business, jotting down my numbers and adjusting my oxygen mask when all of a sudden I blurted out:
"Wouldn't you rather be somewhere else?" 
He stopped what he was doing and looked down at me, smiling,
"No of course not! If I were anywhere else I wouldn't be able to help you and there's nothing else I would rather be doing." 


To this day I have no idea what spurred on my question. I don't remember what my thoughts were before I asked it, but it's pretty obvious that I wanted to be somewhere far away from the 9th floor of the Children's Hospital in-patient floor. But his response comforted me the rest of that night, I remember I slept as comfortably as I could knowing that despite my drugged and broken state of being - there was someone in the world who wanted to be there to help hold me together.

"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 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

Everything was still newspaper gray and I had never known that mornings could exist without the busy traffic. Dad put on Magic 106.7 and I hummed along to one of my favorite songs at the time, 'Everything I do' by Bryan Adams. My toes pointed upwards inches away from where the seat ended, the tips of my Stride Rites swayed to the beat - I was on my way to get my tibia broken in 3 places and have a piece of metal threaded through the bone, you wouldn't have known otherwise because I was happy as could be. Dad chuckled to himself as he watched my feet dancing away to beckon the rising sun.

It doesn't matter whether it's to the dentist, physical therapy, rodding surgery, or just a routine check-up - I always had/have my little rituals whenever I went to Children's Hospital in Boston. Even if I tenderly held a broken arm with one hand, we would get to the hospital a little early so I could grab a snack from the CVS in the lobby and go to the first floor Patient Entertainment Center to play a game of Miss Pacman. (If I was about to go in for an operation mom would buy me some apple juice and read the newspaper while I played game after game).
I have grown alongside Children's Hospital. I have changed and gotten older as the building has gone through renovations and redecorations. If I were to stroll through the building now I could tell you what used to be where and exactly what it used to look like 10 years ago. As it has attained the latest precision in medical care I have acquired more knowledge, and as its staff has become more sensitive to understanding what 'full medical care' means I have come to appreciate all that goes into each doctor's visit. There are too many life lessons I have learned in the silence of a waiting room, in the seconds before my doctor turns on the light table when he puts the x-ray up, sometimes even in the hazy smog of the minutes waking up in the recovery room after an operation - there is always something I am able to learn or teach myself as a distraction from the pain.

Other Suggestions to Ease Hospital Visits:

• If you have a young child try to take the same route to the hospital every time. Placing him or her in as much familiarity as s/he goes into, what may be, a scary 'unknown' will go along way - and it is also a good time to chat with your child about the appointment!
• I know that the last thing any parent wants to do is spend MORE time in the hospital or waiting room with their kid. But in my experience easing me into uncomfortable situations has been less jarring for me. Even if you could get to the appointment a couple minutes early (and aren't doctors usually late anyway??) your child might be able to settle in a bit and try to relax. 
• If your child needs to stay over night at the hospital plan to allow the kid to pack a small bag of toys, books, handheld games, or stuffed animals. 
• Also, if appropriate let your child's friends/classmates know that s/he will be in the hospital. I have received too many Get Well cards from supportive classmates and teachers, all of which I have saved and laughed about. When your child is older let their friends come visit! Some hospitals even allow email messages to be sent to the department's front desk and it will be printed and given to your child each morning. 
• Calm yourself! As a kid at the hospital I was usually unable to move much which ended up honing my observation skills. I would immediately know when mom was about to cry or what it meant when dad grew solemnly quiet. Don't hide these emotions from your child but if possible try to incorporate a sense of 'everything will be okay' into your worries. Kids become stronger when they see and experience their parents' vulnerabilities - they pick it up quickly and you will be surprised at how much bonding you can do with your child's (more than) innocent reaction to the situation.
• If you are there because a fracture had just occurred, LISTEN to the child - and it doesn't matter how young the kid might be. With many OI patients sometimes bone density is too low for a clear picture to be seen on the x-ray. Many microscopic or hair-line fractures will be shrouded in a vast of black and misty white on the 2-D frame, but if you child is clearly in pain - know that images, as high tech they might be, might not be revealing the whole story. I found that it helped me when my parents and orthopedic doctor allowed me to help hold the fractured area and point to where it hurts before any x-ray had been taken. You could even turn it into a guessing game!