Showing posts with label Children's Hospital. Show all posts

I'm at that weird age where I really shouldn't be going to a Children's Hospital anymore, but since I've been there since birth -- and know pretty much everyone, even the Big Apple Circus Clowns (on a first name basis..) I still go. They know me and I know them. This isn't just a matter of comfort and familiarity, it's a matter of logistical ease. As I'm sure many of you know, explaining what O.I. is and knowing precisely "this is what has worked for me in the past.." and "this is what has not worked for me in the past..." matters a lot! 

It matters not only in the sense of saving time on those hour long healthcare visits, but it also matters in the sense of how much pain will I be in, or how high will my blood pressure be after I finish giving Dr. So-and-So a piece of my mind.
When I was little I remember my parents having to go to a specialist for nearly every part of my body. While my brothers could just receive a clean bill of health from their pediatrician for the start of the school year, I would have to make the rounds to each floor of the hospital. At the ages of five and six I thought it was fun to pronounce words like: "audiology" "ophthalmology" and "radiology" -- they were like Dr. Seuss rhymes to me. (More evidence that I am a very deranged person perhaps..) My mom would somehow finagle my appointments so that they would all fit into one day, a cooler would be packed with snacks and sandwiches, my backpack would be stuffed with summer reading books, I usually brought along my favorite toy (the etch-a-sketch) - and it would be a picnic at the hospital.
Maybe it is because I am slightly weird but I really did enjoy hanging out at Boston Children's Hospital. Every possible surface is covered in a swath of bright child-friendly colors; the patient entertainment center has arcade games to play for free; hospital clowns roam the halls (and seemed to follow me wherever I go..); the t.v. in the waiting room was always tuned into Clifford or Wishbone; there were endless pages to color, and elderly volunteers passing out stickers in the hallways; in most of the waiting rooms there are bookshelves lined with books that patients can take home. Honestly? If you take away the needles, the white coats and scrubs -- Boston Children's Hospital is like a glorified day care center. It is fun! (Please note the use of present tense in that last statement).

In other words, in terms of my health care I have been ridiculously spoiled. I once went to an appointment with my younger brother and was shocked by how silent his doctor's office was. In comparison, his doctor's office seemed frighteningly stiff and serious; I decided at that point that I never wanted to stop being a patient at Children's Hospital.

I am no expert in healthcare options but I assume that because O.I. is generally diagnosed at birth, or during childhood years - it is therefore considered a pediatric condition. This makes sense for why many of the specialists that I see are at Children's Hospital -- they know what it is (usually), and know how to treat it. But medicine is changing, there are now many adults who have O.I., those patients who were once diagnosed with the pediatric brittle bone condition are now grown-up adults...myself included.

My orthopedic doctor has been my go-to guy ever since birth. Among my family we have tried many times to play the "guess how old Dr. Shapiro is?" game and we are never certain, and he's not the type of guy to give away his age. The general consensus is that he's old, probably around his 60's at this point - and maybe even close to retirement age? *Gasp* I dread that day when he tells me he is going to retire.

Who will I go to? Will I have to explain how exactly to hold my broken leg? Will I have to explain just the right combination of pain medications to prescribe? Am I going to have to tell someone totally new about why I hate wearing slings? Will this new doctor have a new attitude towards surgeries and operations that I don't agree with? Will Dr. Shapiro's replacement be as willing to write the kinds of medical-need notes that I request? Is he going to be as flexible about allowing me to call his pager directly? There is so much that I dread when the moment comes. I hope it doesn't happen for a very, very, very, very long time. Dr. Shapiro is like my second dad, I wouldn't know what to do if he suddenly decides he wants to retire to a life of watching hockey, and return to Montreal.

But of course I won't deny the fact that there are some parts of me that do require adult health care; and a few of my physicians at Children's Hospital have been kind enough to nudge me in that direction "Sandy, you know, you're not a child anymore -- although of course we would be happy to continue to see you, and we are not trying to push you out of the system.." I appreciate their kind nudging into the more boring adult hospitals. I will miss the sounds, the noise, the colors, and yes - even the clowns. But I am slow-creeping upon a dreaded realization that a part of being an adult also means knowing what is right for you, and accessing what is right for you. Taking the initiative to say "okay, I am no longer a child and want to be treated as such.." means much more than being disgusted when we are spoken to in a condescending manner. It means more than getting upset when I am asked "where is your mother?" It means recognizing for myself what it means to be an adult inside and out.

So what I mean to say is.... I'll get there eventually. Sooner rather than later.

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.

This week has been busy! Let's see what we've got eh?

• Monday: We've all heard about times when handicap placards have been unlawfully used & I shared a time when I was allowing this to happen in my own family. 

• Tuesday: This was the first post of my "Going to School" series and it focuses on parents of K-5 children. 

• Wednesday: In the second post of the "Going to School" series I am addressing all the young students themselves! I wrote a silly poem that I hope helps parents and young children discuss some of the worries they have around the first day of school

• Thursday: Children's Hospital Boston is a place where I owe so much of my growth and development to! When I was asked to share my experiences of transitioning into my first college dorm with other patients of Children's I jumped at the opportunity! 

• Friday: I've been getting several questions about why I write and specifically why I started the blog. Check it out over at Unbreakable Journey for today's Fracture Free Friday post & as always, enjoy your Friday!