Showing posts with label OI patient care. Show all posts

These incidents happened more than a handful of times, but not too frequently to make them a regular occurrence. But every now and then a fracture would happen and my parents couldn't get me to my orthopedic right away.
When these injuries happened it meant my parents would put a temporary brace or splint on the fractured area. They would help get me into a reclined position on my bed, keep my brothers from playing near me, put a stack of books and a bronze bell in case I needed anything near by. Going to sleep this way was the toughest part of the whole situation for me. Despite the temporary splints and braces, the fractures was still fresh and sensitive to any movement or the slightest touch. Fresh fractures also seem to be the breeding ground for muscle spasms, and though I wasn't physically moving it felt like my muscles were tripping the light fantastic till the break of dawn. I would go to sleep repeating in my head, "don't move in your sleep, don't move in your sleep, don't move in your sleep..." hoping that maybe I could teach my body that having brittle bones can be less painful if it would just understand: don't move. 


Eventually after drifting off and then jolting awake, and then slightly shifting my body weight, or itching a spot, or cracking my back, or ringing the bell for another glass of milk, or flipping the pillow over again -- I would fall asleep. Finally I would reach some sort of compromise between the fresh fracture and my body's clear exhaustion. Both would collapse across some invisible dotted line that stretched between Point A: Moment of Fracture to Point B: Moment of Healing. The two parties are completely zonked out, snoring, drooling, deep into la-la land - it translates into some rest for me.

And then morning would come. Usually I would try to wake-up before my parents awoke in an attempt to enjoy the calm before things started being moved around again. Even to this day, there is nothing I despise more and find more uncomfortable than a fresh fracture being moved. I hate it. I would rather repeat all of high school math than be moved around with a non-stabilized broken femur. Please, spare me. But that dreaded moment would come. When I got older, around middle school, I would tell myself it needs to get much worse before it gets much better. And that was the only thing that I kept in my head as I gritted my teeth while my parents, inch by inch:
Transferred me from the bed to the chair. And then from the chair to the toilet. And then from toilet back to the chair. From the chair to the car.. (all the while I am whimpering like a baby)... and on until we had arrived in the x-ray room, and are well on to making a little bit of progress towards Point B: Moment of Healing.

The mental and physical sensation of pain is always going to be overwhelming. What's more is that it's only ever going to be an overwhelming sensation that you can understand. You're the one who knows how big it is, how persistent it is, when it will appear, when it fades, why it comes, or when it goes. So with all of these facts in mind, what are ways that we can better manage the pain? There are a million pain management techniques and tips out there. There is only one that I have found that works, for me, every single time. Inch-by-inch and bite-sized pieces:
When I lay in bed with a fresh fracture thinking about how I need to somehow get from there into the car, and then onto the highway with all of its swerves and bumps - I will only want to curl up into bed and refuse to move. However, if I think - now I need to move 4inches over and into my chair. The pain seems far more bearable and less infinite. In fact, the pain becomes finite because soon I know I'll be able to say: now I need to move from my chair to the examination table so he can put the cast on and it's all done. Destination Point B: Arrived. 

Fewer days are more exciting for me than the day I get my cast off. Roughly ten days before The Big Liberating Event is to happen I start a count down and tell all my friends, including all the strangers I meet who ask me "how did you break your ..?" Without even answering their questions I am usually quick to spit out "I get it off in 10 days!"
So when the day arrives, and the doctor flicks the x-ray up onto the screen - I am just chillin' like a villain, lying flat on the examination table: my hands are tucked behind my head, leg is propped up onto a pillow, and my toes are wiggling impatiently. By this time the cast has usually become a lot looser, and I try flexing my ankle  a few millimeters at a time - smiling happily when no sharp pains trail after my impatient movements.

He gets up from the computer where he has been peering over the x-ray for a few minutes.
"So there's still a very small sliver of a crack left." He tells me, and waits a few seconds for the news to sick in. I stop wiggling and prop myself up on my elbows, suddenly all eyes and ears on edge.
"I think in about another two and a half weeks or so.." But his voice escapes me and falls into some noiseless vacuum where all bad news any doctor has ever had to say goes.
But today was supposed to be the day! Nothing hurts! I can wiggle! And.. secretly... behind my parents' backs I had even been doing my own transfers on the leg, without any pain! This is blasphemy! Sham! The disbelief continued ranting and raving inside of my head.
I am no longer 3 or 4 so I know it wouldn't do any good for me to voice my disappointment. It was clear as day on the x-ray, in literal black and white, the facts were there: the bone hadn't healed completely yet.
After some discussion we decide to go with a bi-val cast, something that I still have to wear all the time but would be able to take it off for baths and showers. He looked at me sternly,
"You'll still have to wear this all the time because the bone isn't strong enough without the support yet." I nodded grudgingly.

Having your hopes dashed can be disappointing regardless of the situation. But in the medical world I have learned a few things about the delicate presence that hope can have. Here are a few of my observations --

Hope is the thing with feathers:

• Hold onto it with or without the facts. In the incident above the hope I had that my leg was healed didn't match up with the black and white image. But that doesn't mean we should give-up the hope! Usually it just means we need to be patient, allow the body to heal more or try a different course of medication. Whatever it is, holding onto that hope allows you to have a kind of standard in which to compare real-time results with. If the test results match up to the hope that you held onto then that might be a good thing, if it doesn't match-up then that helps to inform your next decisions. It serves as a kind of benchmark or check-point for progress, and the best part is that you won't ever be wrong.
• There is always a friend in it. Once you've grasped it then you know that its energy and motivations that hope can exert has no depth. This is important because often times things can get scary and precarious in the midst of confusing medical activity, and when there is uncertainty the environment can be intimidating for everyone involved but particularly for patients. However, if you keep hope near there will always be at least one consistently reliable component in the whole scene that you can look to as a familiar face in an otherwise uncertain crowd. 
• It is low-maintenance. Just have it drifting around in the back of your mind, or even write it down on a scrap of paper if you have to - but that's all you need in order to lay claim to your hope. There is no added cost, no health insurance policy to sneak it through, or extra amenities that it requires. Hope is just there at the ready for you. 

Parents of kids with O.I. are often referring to "the scream." This is the noise that sends our parents scurrying to our side and then whipping out the bag of old splints and bandages that appears out of thin air. It is not the same cry you hear when a toddler is getting a booster shot, and it isn't the same heartbreaking wail when a child's hopes are crushed at the toy store. It is part shriek, part cry, part scream, and all of it is directed at a sliver of wispy gray-white that no one can see until hours later on the x-ray. And even then it is sometimes invisible.
There comes a time when the scream doesn't serve so much as an "alarm" for our caretakers because we realize for ourselves what has happened -- we begin to recognize that the pain is coming from a broken bone, just another fracture. And instead of "the scream" we are then able to say "I just broke a bone.."
So when is that moment? How can caretakers or parents help kids develop that recognition? How do kids with O.I. become better aware and more knowledgeable of where a fracture is? How do we know how 'badly' it is broken? Or even how many places the bone is broken in?
There are a few tips that can help make the experience a little less frightening and a little less uncertain ---

Structuring the Suddenness: 
Warning: Just because you are raising a "Dr. Self" doesn't mean medical opinions should be ignored! 

• It is always most important to listen to the child! Or become acutely aware of where their hands are gripping, or which limb has become oddly limp and unused. Just because you may have heard a crack coming from there, doesn't mean that may be where the bone is broken!
• Let the child hold the broken bone as much as possible - particularly during the transition before going to the doctor's. I know that from my own experience it is difficult for parents to not want to rush in and 'fix' everything themselves; however, knowing how the broken bone feels to us, where it is, how tightly to hold, what position to rest the broken arm in are all small details that begin to build our awareness of our bodies. The body is learning even when things may be breaking down.
• Know which questions to ask. At the time of a fracture, especially for an O.I. fracture, "how did this happen?" Might be one of the first two questions that are on the tip of your tongue. But think about it!! The child has O.I.!! And most of the time, especially for young children, we aren't always aware of how the bone suddenly broke. From my experience, I used to become extremely frustrated with school nurses who would ask me "how did this happen? What happened?" before they would assess where the injury was. It doesn't help the O.I. child when you are trying to figure out the "how and why's" while they are in pain; in my experience in fact, it only made me feel worse. Instead figure out "where does it hurt?" "What hurts?" "How much does it hurt?" "Can you wiggle your fingers?" "Does your leg feel numb?" Thinking about fracture prevention is important, but not until after you have taken care of the incident at hand first!
• Let the child be a part of the 'grown-up' discussion. This might be difficult because the fine line between protecting and shielding are so often blurred. However seeing the x-ray, listening to the doctor talk with my parents about healing time, and becoming 'naturalized' to the language and vocabulary all became useful tools to becoming self-aware of my body. Of course no parent wants their child to hear the doctor say "healing might take about 5 months.." but the reality of it is that we begin to connect the pain to healing-time that is required. It is a difficult connection to describe in words, but understanding that my arms heal faster than my legs or that my ribs take about 2-3 weeks to heal have helped me become better equipped at assessing my own physical abilities.
• Routine. No one likes the idea of breaking bones becoming a routine. But because of the frequency of these incidents the truth is that there is some kind of routine to each of our own fracture management procedures. Whether the child fell off a trampoline, broke a clavicle, or sustained a bruise to the bone -- try to keep some semblance of order in the chaos. I know, I know many of you are thinking Sandy, you just wait until YOU have a kid with O.I and THEN you try doing this..but growing up I have appreciated the order in which my parents dealt with broken bones. It helps to know that small instances in life that can quickly be turned upside down are not reasons to feel despair. It helps to know that just because you broke a bone doing something your brother does all the time doesn't mean you were wrong to do it. And it helps to watch that no matter how badly things feel anything can be righted once again!  

I remember there were times when to get a point across, my parents told people that they had a severely handicapped child:
"My wife doesn't work because she needs to take care of our severely disabled daughter.." 
"Our family appreciates any financial assistance you may be able to provide. We have a wheelchair-bound, severely disabled child and much of our family's attention & finances go to her care.." 

But then there were times when I was suddenly capable of everything in the world:
"It's important that Sandy participates in everything her classmates do in school. There is nothing wrong with her mind, when she doesn't have a broken bone nothing is wrong."
"There isn't anything wrong with her - she just can't walk." 

Needless to say hearing how my parents described or explained O.I. to others was very confusing for me. Sometimes they made me out to be extremely severe out of nervous protection for me, and other times I might as well have been any other kid who was encouraged to do everything I wanted. Personally, I never considered myself to be severely disabled. I could probably count on one hand the things that I wish I could do but I can't (future blog post!) - for everything else though I have figured out an alternative. This has led me to believe that the interpretation of 'mild' 'moderate' or 'severe' varies between the individual affected, and those who are their caretakers. For instance, when I was in a spica cast I didn't consider myself to be severely disabled. Though I needed help with virtually everything - I was still able to live my life. There was always a way to do what I needed to do and what I wanted to do, and therefore in my mind I didn't consider myself to be severely disabled. However I'm sure that for my parents my time in a spica cast was one of my more 'severe' O.I. phases. Simply put, they had to do more for me than when I was in a long leg cast, or even in no cast at all.

I get slightly uncomfortable when people compare severity of O.I. or any other disability. How do people determine severity? Is it by the amount of pain? Limitations? Capabilities? Bone deformities? Number of fractures? Surgeries? Prognosis? The categories are limitless and there are no clinical benchmarks that I know of or empirical standards to measure severe-ness by (excuse the social science in me...) Granted some cases are pretty obvious - I know of O.I.'ers who are able to walk without any assistance, while others have difficulty sitting in an upright position (and they even all identify as the same O.I. type!)

All of that aside -- and back to the original point of this entry -- observing how my family defined my disability shaped my own idea of it. I grew up understanding that my O.I. can give me more trouble than other times. There are times when I need to be paying more attention to 'it' than others, and other times when it's just a thing that allows me to cruise around town and be at ass-level with everyone else. Since I ultimately didn't agree with my parents' idea of severe or mild, when I got old enough, I didn't take their definition of my disability as my own. At some point I realized that they are not the ones who live with it, they're not the ones who wake-up every morning and decide whether or not today will be a high or low activity day, and are not the ones to decide when to take the pain medication after a fracture. Sure they may have taught me how to make these decisions on my own, but I've decided that it makes my life easier and less barrier driven when I don't have to consider whether or not I'm 'mild' 'moderate' or 'severe'; also, the barriers are less of an affront when I am not carrying others' definitions of my disability on my shoulders.

"Sandy, I was reading on-line that there are different types of O.I. So what type are you?" My friend from college asked. 
"Oh I don't know. I'm clinically type III but sometimes I think that I'm just my own type after all."

As sad as it may sound, after about 100+ fractures (and for some of you maybe even less) I have been able to compare fractures. "Yeah, I think I broke my toe or something - whatever it's not a big deal. I don't really even walk anyway." How many of you have said something along those similar lines to non-OI'ers and gotten a  look of stunned disbelief? I will admit to have broken ribs or a shoulder and not gone to see my orthopedic doctor. Instead  I have grown to know how to slip in and out of my clothes when I can't raise my arm above my ear. Or I have been able to stifle coughs and sneezes, shifting to the un-injured side a bit, to dull the wincing stab of a broken rib. Recently I broke my ankle and called my doctor the same day it happened, his response was: "well can you use an old cast or splint to stable it until tomorrow?" For most other kids a broken arm can be a painfully uncomfortable 5 hour wait at the emergency room, for us familiar with the situation it's 'pull out the sling and be damn cautious.' Or we just lay in bed and pop a tylenol w/codeine pill left over from our last surgery.
Is this reckless behavior? When will OI kids begin to know 'if it's a 'big' enough fracture?' to warrant fretting parents and an hour or longer drive to the hospital? Why do OI'ers do this? Should it be discouraged?
Disclaimer: I am not advocating for kids to skip the doctor's visit if there IS a fracture regardless of how painful or not it is. This is just what I've done, and have known other OI'ers to do as well.

I remember in elementary school when fractures would occur (which was frequent), I would just stop by the nurses office and my mom or dad would bring an old splint or sling and then send me back to class. (The fact that I loved school and being there had much to do with this). The doctor's appointment would be made after school and then life would continue as normally as ever. I can't imagine what my teachers thought as this continued well into high school and schools would be paranoid with worry about liability issues. As I grew and as fractures happened I learned to be able to tell the radiologist that turning or shifting an injured area would be too painful, the memory of the pain - no matter how long ago my last fracture, could be quickly recalled and I would wince just thinking about it. Luckily I also happen to have an orthopedic doctor that takes my word before the x-ray; his attention to where I pointed to the pain even as a 4 year-old not only empowered me to know that I was in control of my own body and the O.I., but that despite his stupendous ingenious and medical degrees - he trusted me to know my own body. This is key. If it weren't for that I probably wouldn't trust myself as much, be as willing to explore and push my body to discover what I can and cannot handle. So now whenever the snap, pop, crack, and the burning swords pierce my insides I am able to breathe calmly and ask myself: is this big enough to matter? When I say "enough to matter" I mean is it necessary to call the doctor right then? His page number is ingrained in my head and listed as my emergency contact in my cell phone. Or can I trust myself to know what to do next, because I know that when I get to him he'll ask me "well, can you point to me where it hurts? And how much does it hurt?"

Other tips to gauge fracture 'seriousness':

• If you have a young child who is unable to communicate a doctor's visit is required. But even at this stage you can begin to get into a 'pain threshold' routine. Ask him or her how much it hurts, where it hurts, use the scale of 1-10, or use a pain chart with smiley and frowning faces to exemplify how much it hurts. Getting into a routine will help establish some semblance of "normalcy" or "what can I expect?" consistency despite the uncertainty of not knowing where and how much is the pain. 
• For school-aged children I would suggest letting your child's school nurse/principal/teachers/P.E. teachers know of the plan when fractures happen. (Day care personnel, baby sitters and other care takers). I know my mother was not always so keen on listening to me first when I broke something in school, it took about... 25 fractures to happen before she felt like she could listen to me. Get a signed doctor's note to "okay the plan" if necessary!
• If you have a infant who you suspect has a fracture but you are uncertain? My parents used to gently tickle me in various places, whichever limb flailed with that unique cry/scream would be the injured area. 
• Know that your child is not taking this lightly, s/he is probably not just "blowing something off." The bottom line is that fractures are painful, regardless of how large or small. At least 50% of how painful something is is dependent upon how the pain is being managed. If it has happened before our bodies have their own memories. I always seem to inherently know/remember just how to get dressed or turn in bed in the least painful way possible. (Again, this is true for me - may not be the case for everyone!)
• Even if it's NOT "big enough to matter" pain should never be taken lightly. If it is bothersome go see your doctor. Hairline fractures can be just as painful as a clean break. 

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!