But kids get sick and they do suffer.

its reality. call it the fall. call it evil. call it the facts of life.

kids suffer.

So what do we do with that information?  Well we try to alleviate their suffering…..what does alleviate mean?

11 yo with cystic fibrosis (bad, bad thick mucous slowly clogs your lungs and your pancreas making breathing, digestion and eventually sugar balance difficult).

CF is a bad disease and we require a lot from our patients to maintain their health.  Our patients are frequently in the hospital with lung infections.

What kind of allowances do we make for children who suffer?  Is it ok if they don’t always have to obey the rules?  What about doing their therapies?  Taking care of them selves?   Do we  not cause further suffering by just letting them get away with stuff?
On the CF floor, we never make the kids do their Pulmonary function tests if they don’t want, we never make them control their blood sugar even if the have normal BMIs because they are CF kids so obviously they All are failure to thrive (MYTH!)!

Frankly it drives me to distraction.  Do you know what the increased mortality is from poorly controlled diabetes with CF…A DECADE. A DECADE of a life for a person with CF??? (thats with the average life span, 25% of their lives)

I realize sometimes we have to choose our battles but we also have to make sure  to help our patients fight theirs.  CF sucks. Being sick sucks.  Not being able to have a normal childhood sucks. Dying in childhood sucks more.

I don’t think we alleviate suffering by pitying the patient or pampering them. I don’t think we teach them self-advocacy and I don’t think we teach them to fight.  That doesn’t mean we should cram medicine down their throats or be cruel or legalistic about or force them to do anything. It just means we are honest with them  and that we encourage them not to think about how their life sucks because they are different but by giving the same expectations and grace we would give any child.  A sense of boundaries, a sense of security and encouragement.

Yes Children suffer.

But children suffer more when we don’t love then and treat them with the expectation that they matter enough to us that we will fight for them.

:::off soapbox::::

In Kenya we had one ventilator:

We had to fight off the adult doctors for it. Every time one of our kids was crashing, we rushed up to the ICU and talked to my dear mentor and friend Dr. L  (med/peds) who ran the P, N, M, S, etc- ICU and figured out who needed the vent the most and who had the best possible outcome. Sometimes our kids won. Sometimes a premature a baby would win. Sometimes the big people won.  The decisions were daily, the stakes were high, people lived and died off our decisions. Sadly none of the children I saw ventilated  made it back to the floor or nursery.  We had very little.   In fact, I was there when the Haiti earthquake happened and we all watched the news and had ICU envy….the Haitian patients got flown to FL….we wondered where were these magic planes to the land of opportunity last week when the one ventilator ICUs of Haiti were deciding who lives and who dies and where were these magic plans for Kenya?

In the TCC, a step down ICU for children who have tracheotomies and/or are ventilator dependent we have infinite ventilators.  We have ventilators in the hallway, in the corner, we have back up ventilators.  We have BiPAP, CPAP, pressure control, volume control and I am fairly convinced that somewhere in the back closest somewhere we have ventilators that makes you fly.  I spent the first two weeks of my pulmonary month among  children who would never have even had a chance at THE ventilator, some who outside of the world of shiny ivory tower of the best pediatric care in the world would never have made it even in the West. But here they are still breathing, still hoping.

Some of these children melt my heart, one is 7 yo and lives at the Children’s hospital. He goes to school a few miles away every day on the bus, he is in the first grade, is crazy about trains, Star Wars and people.   He is abandoned and on chronic TPN (IV food)  so other homes for medically complex children won’t take him.  So he lives with us,  Child Life,  nursing assistants and the occasional on-call resident are his play mates. His nurses, teachers and fellow patients are his family.    I am broken for him. SO happy that we have the technology here that lets this beautiful soul grow up and learn how to read and go to the zoo and meet his first girlfriend. But my heart is so broken that as a society we have no place for him.  We saved him but we don’t want him.

I know about not being wanted…because you are different..my sweet babies in Romania have taught me about that.

There are some others like my friend.  A 29 yo math genius with a neuro-muscular disease who can talk by moving his eyebrows with stickers on them.   A much beloved boy with spinal bifida who loves sports and whose family is devoted to him.

But then there are others who I don’t know what we are fighting for….their lives are nothing but the sensation of pain and struggling to breath.  One baby has an inoperative congenital heart defect and is bleeding from her gut. We can’t do anything for her except keep her on a ventilator, we can’t make her better and her parents refuse to withdraw care.  Another had a devastating brain injury and has no higher brain function and limited brain stem function considering he is still on a ventilator.  He seizes, winches in pain and rarely opens his eyes.  Just because we can save them all…does it mean we should……

….am I too bold to suggest we should let children die…. and am I a terrible pediatrician….should I turn in my white coat and quit now….

what I learned from the ONE ventilator is that with technology comes great responsibility….in the states we don’t always remember this because we have so much technology that it seems like an unlimited resource. But we have other resources that can also be unlimited that we must not forget: suffering.  We doctors have a commitment to alleviating it.  There are many forms of suffering. There is physical pain, grief, hopelessness and anger.  Children dying is not something we talk about in America.  We have insulated our selves where technology can stop death,  we can beat death. But what if that is not the goal?  What if at the expense of saving ourselves, the parents, etc the pain of grief or loss or separation, we buy a child, an innocent child a life of nothing but pain?  Did we do the right thing?   And who did we do the right thing for??

We have a responsibility as pediatricians to our patients and sometimes I think as I get paged to the TCC at 2 in the morning for a seizure or child being coded or nearly coded. I sometimes wonder in these children who know nothing but physical pain that they are crying out, screaming,  begging, please let me go. Its ok, this is what should happen.  The best way to save me, to love me is to let me go to Jesus.

But I of course pull all stops. I race downstairs and hope to God that we can just make it till morning when the meeting of the minds can tweak the magical ventilators that make dead babies fly and beat death again.

…..after the crisises of the night are averted or as I get in my car post-call in the dark parking garage and have a chance to think I can’t help but wonder if the children we tweak and play with as our own lab of physiology would make the same choices for us if the situation was reversed.  And I wonder if the children we save that society doesn’t want would offer us the same gracious welcome to human family.

I shake it off and pull out into the sunshine and think about grateful African mamas hugging their dying babies who can’t be on the one ventilator but are so grateful for the palliative O2 and prayers w offer  and my Romanian babies reaching out from their cribs as I tidy up at the end of our play session.

And I know one thing for sure,  these children understand grace, mercy and loving thy neighbor far better than I do.  I seat at their feet and learn.  And yes I think in so  many ways I learn more from them than from all the ivory towers of medicine combined.

“Many things we need can wait. The child cannot. Now is the time his bones are formed, his mind developed. To him we cannot say tomorrow, his name is today.”

— Gabriela Mistral

I love my job. I love my job. I love my job.

I had great intentions of writing an epic entry about how much I love my new surroundings and how challenged and encouraged I feel at my new program.

Then today happened.  And well.

I love my job. I love my job.

but some days it sucks.

5 mon old with a trach due to a cyst in his airway that she was born with.  She is beautiful, she smiles and tracks and loves people.

She lives in a neighborhood that happens to be rape capitol and most violent places in America. Its also one of the poorest.

For three weeks since I got here we have worked to get him, his pregnant, single, Mom who is younger than me HOME.

I have talked to her pediatrician, home health, social work, discharge planning, ENT, GI, God and Mom. I spent my first two weeks of internship loving and advocating for this little girl.  Because this is what I believe in. I believe that early intervention can work in the slums, I believe these kids are worth fighting for.

Today was D-DAY.

Home health called after rounds after I told Mom that today was the day.  They  did a reevaluation….they won’t send anyone to THAT neighborhood anymore plus Mom is a social concern, did we know she was pregnant??? And single??? And uneducated???

Yes we knew and yes we are skeptical too. Thats why we spent four weeks teaching Mom to do trach care and tube feeds. She learned it all beautifully and yes she is poor but she is not stupid.

And the fact is, this is America. We don’t take kids away from their parents just because they are medically complicated.  I’ve been in a society like that and believe me while this situation isn’t ideal that one is a diaster and a moral travesty.  The thought of this beautiful baby who is cognitively a 110% been warehoused makes me sick.

Mom deserves a chance.  The baby deserves the chance at his blood family before being turned over to foster care.

After my attending and I begged home health, listened to the SW and the nurses bash Mom, home health, the universe and our team.  And getting no where for hours and hours.

I had to go tell Mom.   She told me that she knew we didn’t trust her especially the nurses….and she thought I was lying because every day I come in and say he is going home and yet he never does.

An hour later I got another page and we went through it again.

And then I came home and crumpled

I love my job. I love my job.

because I love these children. I don’t care where they live, or what country they hail from or how much we think their situation is terrible.  Its not about that.

Its about the child.

A precious child who while I am telling her Mother and she is yelling at the me, at the situation (I would yell too).  She is just smiling at me as if to say I forgive you.  I forgive them.  I love you because you care even if you fail.

and i crumple in the light of her grace, of her wisdom.

I only wish that we could all just for a moment stop moving, stop screaming, stop writing paper work and filing medicaid and remember that in the end this is about that.

Its about the child…

I am still that navybrat inside. I am still a homeless  nomad always in search of my next adventure. Or so I thought till I moved to the Midwest.  Yes my house was unpacked within 48 hours of hitting Ohio soil.  Yes by the time orientation started I had all my paperwork in to the state of ohio,  been to the grocery store and had house plants. I transplant well.  My family is still  like a moving machine.

But the difference is I am homesick. For first time in my 25 years of moving. I am truly homesick. Its not my parents, its not my school, its not even my friends that I miss. Its the sameness.  Its the culture. Its the manners: the thank you m’am, No Sir, hold the door open for a lady or a baby stroller every day occurrences that I have taken for granted.  Its the sunset over the mts in the summer all lavender and deep blue blending together. And its also the ability to get in my car and be at the ocean in 4 hours or with my grandparents in 4.5 or nearly all my best friends from college/high school and my family within 2-3.  Its the anticipation of basketball season even as early as July.  Its the accent, deep, slow and quick to laugh like a summer afternoon.  Its the people walking their dogs and waving at you while you water your plants. Its the neighbors who don’t need a reason to walk on over and shoot the breeze with when you get your mail. Its the check out lady at the grocery store who tells you about her dreams of becoming a famous artist while she rings up your ground turkey and bananas.

These things leave a hole deep down.  A hole that cannot be filled by amazing ice cream or my awesome, new friends who are just as nerdy and in love with pediatrics, global health and board games as I am or the best farmer’s market I have ever been too or a faith based pediatrics clinic that I get to be a real pediatrician one half day week for the next three years or my cute little emerging church…..

And I realize that I am no longer a nomad.  I have a home.   And its sort of rocks my world.  Because being a nomad is who I have been for 25 years.   I realize that for the better or for worse some time between 10th grade moving to Roanoke and May 17, 2010 graduating from Medical school.  Western NC/VA (very similar although unique in their own rights) became home.  Somehow the southern drawl, the BBQ, the outdoorsy, laid back, sweet tea, banjo music and James Taylor with a touch of class up Roanoke way has taken root and its not going to be able to weeded out by Ohio or probably anywhere else in the future.

It doesn’t mean that I am not glad to be here. That I don’t wake up and pinch myself that I get to learn pediatrics at one of the best (if not the best) children’s hospitals in the world.  Because I am still doing that.

It just means that when people ask me where I am from, for the first time in 25 years…I have an answer.   And it an answer that fills my heart with longing but also a sense of belonging, of being from…

And I think that doesn’t mean I won’t thrive anywhere, that I won’t thrive here, it just means I have a home.

and I didn’t know I needed one.  But I think perhaps I am a bit more whole now that I have one.

One is in a wheelchair. A green wheelchair.

The wheelchair does not fit on the bus.   The girl in the wheelchair gets up and starts to fold up the chair. With her backpack on her back with the body under one arm and the wheels under the other she is tittering as the bus arrives.  The other 11 people stare at her.

In their eyes they they tell their stories….uncomfortable, guilty, annoyed, not making eye contact.

11 people rush by to get on the bus.

The girl is left lugging her chair slowly up the bus stairs.  Finally one person offers a hand.

The bus driver. (a middle aged, obese African American woman)

Then one of the people on the bus rushes forward almost too late to help at all.

The bus leaves. When it arrives at its destination. The bus driver picks up the chair and the wheels and places them on the sidewalk for the girl with a smile.

The 11 people look on, some gawking, some looking guilty, some walking quickly toward the building because if they are oblivious it didn’t happen on their watch.

The girl reassembles the chair and thanks the bus driver.

Then she follows the other 11.

The 12 bus riders.

There are the same age…..

……they are the same soci-economic status….

……..most are white or Asian

They have all have advanced degrees.

In fact they are all doctors.

Medical Doctors.

Pediatricians no less.

Is it because I live in the North now? Is it because I am professional now?  Or is because doctors are uncomfortable with the idea of disabled doctors?

or is it none of the above.

All I know is this never happened to me in NC. It happens to me every day here.  I get doors slammed in front of me, I have people take the stairs in front of me in a group even while I am saying the elevator is this way, people rarely talk socially to me if I am the chair so I push the chair so I can have conversations…..

Oddly the program here is much more supportive then the school in NC (see previous entry). Yet my colleagues there were much more accepting than my colleagues here.

What gets me is not the social persecution (because when I am with my new friends they are not like this…not everyone is like this just most of them) or even that my life is physically harder (I am ok with doing things myself…I get through it) its that these people are about to be released on my tribe.    Its fact that most of them walk on by completely ignoring me as if I don’t exist to them in the wheelchair.   What does that mean for their patients many of whom will be chronically ill, or disfigured or using assisted devices?

SO  do they only talk to disabled people or choose to be compassionate when they get paid for it?

No I don’t think its that.  I think its just that I mess up their concept of the doctor-patient sacred boundary.  And I mess with their comfort zones.  Gimps are supposed to be needy and sell pencils on street corners.

But then there is the bus driver….why did she help when my peers, the doctors didn’t?

I don’t know her.  But I could make some guesses.  Although guesses are dangerous.  She doesn’t have our education or our privileges but perhaps she is better for it. Perhaps she knows something that most of my peers and most physicians will never understand even though they are up to their eyeballs in it.

Maybe she knows what its like to suffer or be different or know pain.  Not even necessarily in the physical ways I have known them.

Most doctors (by NO MEANS ALL) who grow up in the states and train in the states know very little of these things.

And in the end I think this is the problem. This is the cultural barrier. Its not my collagen genes or my flat face or my southern drawl.

Its what they don’t know that I do that is so terrifying.   Because believe me if there is anything that we doctors hate its to be one who doesn’t know whats going on.

I love Wake Forest.  I have the t-shirt, the hat, the flag, the tie-dye!, the key chain, the bumper stickers and the license plate border.  My new car is gold and black.  I sing the fight song and the alma mater and I of course detest UNC and Duke with my soul.  And while Medical school was not always a bed of roses and rainbows especially in terms of gimpness…I stood up for Wake because I loved Wake. I was happy there. Whatever you do don’t mess with my Wake.

Then in a strange series of events I have been pursued and recruited by one of the best pediatric programs in the country (perhaps the world!) which is NOT Wake Forest. And I work here now (or at least orienting now, work on Monday.  The rose colored glasses have come off.

Here I am not a freak. I am not an exception.  I am not even a pioneer. I am number FOUR. I am the fourth resident with a major disability to come through the program.  After I matched I sent an e-mail explaining to the program directors and chiefs my story and what I would need.  They e-mailed me back thanking me but surprised of course whatever  I needed was mine to have.  Everything is accessible. There are  other disabled employees that I see every day working at the medical center. And there is another intern in my year who also has a milder connective tissue disease and disability.

Beyond gimp life, the culture here is ALL about collaboration.  I thought wake was team oriented then I came here where everything is about communal learning.  The culture is phenomenal both for us and our patients. They invented and are perfecting family centered rounds….its so great.  (we round in the room with the family participating).

And I have been a patient…yes already.  I was seen in the connective tissue transition clinic. It was the most enlightening doctor’s appointment I have had in a decade.

Its AMAZING. And I wonder why in the world did I put up with the crap I put up with at Wake…but I love Wake….::::trembling lip:::: I find myself looking back and thinking why oh why did I allow myself to go through the fiasco that was the ED (even the peds side) or the procedures curriculum or allow a gross HIPPA violation of my records to occur, or faculty to say rude things about my disability.  Why didn’t I stand up and say SHUT UP and let me learn.

I have no regrets. Not really. I love Wake but I now understand that my expectations for disabilitness and medical culture have been lower by medical school.   Wake has a loooong way to go.

But I still love Wake. But now that they don’t control my future.  You better believe that when I return in September as a guest lecturer I will be looking for ways to encourage them to keep going.

Now if I just get of my intense anxiety of not being smart enough to be here…life would be sweet.

For the first time (because I have been here since I left home at 17) I am transferring all my medical records, finding new doctors and making sure I have all the checks in the boxes before I transition up to my new place in the world.  Its a comedy of errors.  I e-mailed the peds ortho folks at Childrens about where to go as an adult with Skeletal Dysplasia (SD) fully expecting a list of adult doctors. Instead I got the clinical geneticist working me in next month to the TRANSITIONAL SD clinic that see adults with SD at Childrens. Initially it bothered me that I would go see the doctors at work considering what happened here. But I figured this was such a good thing…right I mean they know all about my disease unlike other adult docs and its one stop for ortho/rheum/general medicine/PT.  One of those cool, trendy, state of the art inter-disciplinary, holistic sort of places.

I have been going to the doctor and gathering records all week to fax to this new doc.  Today I nearly had a melt down.  I had made an eye appt a month ago…they are extremely hard to come by.  I get there and turns out instead of the resident clinic I have been placed in the optometrist clinic.   In theory most medical students can see the optometrist but  this medical student has connective tissue that makes a tissue thin retina that may  rip itself to shreds one of these days.   Tomorrow is my last day of school and I am leaving the country the day after graduation.  So for the first time in my life I flash my ID and say YOU HAVE TO FIX THIS RIGHT NOW.  And they do because I am almost a doctor and I looked like I was going to cry.  They put me into the walk in emergency clinic. I walked back to the waiting room wondering why am I so unglued?

I go up to medical records and am greeted by a somewhat bored and dour clerk who seems seriously put out about the fact I want four years of records copied and released to me.   Why does this all have to be so difficult?

I packed all evening filling my boxes with dishes, glasses, pictures and books and pondering.  I then went downstairs and while I was folding my favorite pair of fuzzy pink PJs pants I had a moment of shocking clarity.   I DON’T WANT TO BE A FREAK SHOW ANYMORE.   Yes my doctors here don’t know Kniest Syndrome from RA half the time and its great. Because they do know medical students and fractures and chronic pain. They don’t parade me in front of every student, resident and fellow in the tri-state area.  That’s what I remember about being a child and going to the doctor being a complete freak show.  (never mind that in Feb I lived the dream and worked for the freak show as a medical student).  I like the anonymity of just being a young adult patient. I like that internists are not squealing over some weird genetic disease. I like how we solve my problems as a team because I know more about my diagnosis than they do. I know that’s bizarre and ridicilous but its true.

But its time of course me to suck it up and be grateful that I have the chance to have access to such good care and know that while the medical education system makes me feel like a freak show as a patient it is how I got to this point as a doctor.

Its a give and take situation.

We had dinner and on our way home she mentioned a friend of hers, who also has SB was in the hospital and it was her birthday.  It was 8PM, only hour left of visiting hours but who cares. I have of course for 14 more days a pass that can get us in anyway.  We drove down to the hospital, parked in employee parking. I put her in the wheelchair (she walks short distances with a crutch so we had left her chair at home)  and we walked up to Brenner’s. (not to mention that up until about 8 weeks ago walking all the way to there seemed to be forever but with the new shiny hip its no sweat!).

There we were two gimps in the hospital late at night wandering the halls.  We found her friend’s room. I found myself after introductions falling back into the shadows of the darkened room perched up on the counter.  I watched as my young friend spoke words of wisdom and comfort to her friend in the bed. But then the most astonishing thing happened. She began to inquire about her symptoms, her hospital course. She listened in that way they try to teach but really is an art that one is born with. I stayed frozen in the moment both saddened and joyous by the potential in my friend.

Before we left she made sure her friend had her call button, a drink and offered her entertainment. As we walked back to the car I thought about what it means to be graduating from medical school. I know things now. But what I realize perhaps is that the things I know that are the most important I didn’t learn in medical school.   I learned them from my Kniest Dyspalsia in long sleepless nights at AI Dupont just as my friend did here at Brenner’s with her Spinal Bifida.   I told my friend I was impressed with her history and empathy skills. She shrugs it off  as just speaking from experience.

I smile I know that excuse. I use it often.

As I come to the end of my formal medical education I realize that it is not so much the leaving as it is the coming back to my first educators….my tribe…

-we were impressed.

-first you were born

-then you learned how roll over and crawl (although you only combat crawled…tisk, tisk)

-then wonders of wonders you learned to walk.

-then you grew up

wow.

Despite your chronic illness

-we were impressed

-you got up this morning

-you brushed your hair and put on clean clothles

-you got to work on time and were engaged in activity

Despite your use of a wheelchair

-you can drive a car

-You can carry your own stuff

-you can play sports

-you go out and do fun things

Despite your disability or as the ED puts it “health setback”

-you showed up

-you did all the requirements

-you were professional

-you did everything your peers did

-including doing better than average on the exam

Acceptance is very simple it will happen when society realizes that its not despite it I did this or because of it I did this…

Acceptance is… I do. I did.  I will do because I am a human being first and foremost.

“This is an example of a potentially poor outcome.” the nurse told me matter-of-factly. I look down and see tiny hands grasping mine and bright eyes exploring my face.  My medical training registers the curl of his fingers, the shape of his eyes and the dimple over his lip that defines his diagnosis. But I don’t see a poor outcome. I see a child. I also see myself.  25 years ago I was the baby in the nursery who was thought to be a poor outcome.  I have a disability that stems from a genetic bone disease that I was born with.  I am a patient and a student doctor. My disability was my first attending and it is my constant board exam. It has taught me compassion, humility and grace throughout my life and even more so in medical school.

Just like my classmates:  I take call, I write notes, I learn how to do procedures, I deliver babies and I rotate through all the required specialties.  I do this by using a manual wheelchair to round, an amplified stethoscope to auscultate and a stool to suture or assist in the OR.  Unlike most of my colleagues I can sit down next to my anxious or weeping patient and relate to what its like: to undergo anesthesia , or receive bad news from their doctor or go through rehab after a trauma or a major surgical procedure or even be denied health insurance.

I have never had a patient who didn’t want me to be a part of their care because of my disability but I have had many thank me for sharing my own struggles and stories. I have occasionally encountered an attending or a colleague who was skeptical. But in the end in nearly every situation by the end of the rotation I found that we have learned from each other’s perspectives and become better physicians.

As a patient, as a disabled individual I am a member of one of the largest, most underserved minority groups.   The disabled community makes up 11% of the US population but less than 1% of medical school graduates. I am grateful to Wake Forest for catching the vision and realizing that physicians with disabilities have something not just to learn but also to teach.   I believe my patients are grateful too.  They know that I provide excellent care. They also know most of all that I do not see the labels of illness or disability or poor outcomes, I see them first and foremost as human beings like myself.