Through the veil…..

When you think about a sick child…what kind of images flow through your mind??  Probably unhappy ones.  Children should not suffer. Its one of the rules of the universe….all religions seem to agree on it….all moral codes…the innocent should not suffer.

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::::

Bedfellowes, Limbo and the Land of Opportunity

Pediatric Pulmonary medicine is an American creation.

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.

for the love…

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…

Homesickness

When i was a kid, my family was ridiculous…ok come to think of it we still are.  Moving was a lifestyle.  It sort of defined us.  We didn’t buy certain things because we wouldn’t be able to move them.   Or we would take great comfort that we would find that missing shirt or the remote when we moved.  When it came time to move.  It was like a well oiled machine.  First we house hunted, my parents knew all the tricks, knew how to find the right school district, church, grocery store, park all the while being frugal to a fault. Mom would have a party for each us to say goodbye to our friends, we made t-shirts with hand prints and quilts  and friendship bracelets.  Then we taped, we packaged, we boxed, we carted and we got it done in record breaking times. Then we got in the car and would drive 12-15 hours with three kids, a dog, a cat and various rodents that my sister Victoria had that never seem to quite last long enough for us to remember their names.  Then we started anew, we unpacked, Mom would take us to our new school and we would meet our teachers.  We would go to all the play groups and play grounds and meet new friends and then we would have parties to get to know them.  Basically my family made moving 10 times before the age of 18 a great adventure rather than a series of childhood traumas.

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.

Cultural Obligations

12 people are waiting for a bus.

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.