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.

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.

Transition…..transition…

In September I had a hip replacement at 25.   My surgeon with his cowboy confidence and bigger than life ego told me as I sat there on a gurney with a heart rate of 119 signing the consent with a shaky hand that it was going to change my life.  I remember thinking dude, I like my life.  Just end the endless sleepless nights with hip pain and I will be happy. Don’t mess with my life.  In fact whatever you don’t screw it up.

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.

Transition, Transitional Medicine, Total Freak Show….

My life is in an uproar.  I am becoming a real adult and a doctor all at the same time.

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.

Strange Bedfellowes

I woke up this morning and pulled on my chacos and some leggings. Over the leggings I put my African Kanga.   I put on my Masai earrings and my special necklace made for me and given to me by a disabled woman in a small village in the valley.  Today was Global Health Day.  Every day of my life is Global health day. I think about my friends and times abroad at least 20 times a day. But today other people thought about it.

Because I am sort of a global health nut and because Dr. B who happens to run the medical school likes me I got asked to go to the OTHER GLOBAL HEALTH DAY and speak.  OTHER being code for where we raise money for the new global health program. It was in the medical school board room.  It should be noted that I had to ask directions to the medical school board room. It should also be noted that my two compatriots were in suits.

The table was set  formally. It had ALL THE DIFFERENT TYPES OF FORKS.  There were three.   3 forks!!! 3 forks to raise money for people with no forks.  It dripped of old south. We had sweet tea with lemon to drink, three courses, key-lime pie and a waiter for the main table who was quite sadly one of three African Americans in the whole room. There were name cards.  I set next to Dr. B at the head of the table.

Most of the attendees were older than my grandparents. . They were retired physicians, people with foundations to their names. And there was me staring down at my forks in my kanga wondering how bizarre life is.  And thinking that I felt more at home in a Masai hut made from cow dung and mud drinking chai with flies than I did in this room in the heart of  my school, in my country.

I spoke, sat down and pondered about trying to describe this scene  to the Kenyan mothers who had braided my hair and trusted me with their babies. What would I say?   Well a bunch of rich white people got together and ate too much so other rich white people could go and take care of babies.

They would stare and laugh. And say doctari nywara your country is a strange place with strange ways.

and I would say.

ndio ndio.