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.

London was beautiful from the air, the english countryside was bathed in white.  My connection went flawlessly and although my flight got delayed a bit on the ground it was a great flight. One I will never forget. I watched the map program every couple of minutes once we hit the Med. Sea wanting to see the coast of Africa as we crossed it. It was beautiful and shockingly different than the coast we left behind in Italy.  I watched the sunset of Sudan and by the time we entered Kenya, I couldn’t sit still with excitement. The last time I did this whole go to a new country/new continent thing on my own I was 19 on my way to Romania. I was considerably less freaked this time around. I got my visa without problem despite the fact I accidentally left my original copy of my yellow fever vaccination in America on my scanner. All of my luggage made it and I was picked up by a kind man named George who took me to the Mayfield guesthouse. The guesthouse is lovely, full of  African art, mosquito nets and people from all over Africa who are passing through. I shared a room with a lovely girl from Ireland who is going to teach in a primary school in the North of Kenya.

I didn’t sleep much but I enjoyed what little I did get. I woke up early since my roommate was on her way north.  Took a shower, felt human and then explored the guest house. We eat meals family style here. The rest of the medical team that was supposed to meet me in London finally made it. Two of them will come to Kijabe with me. While they slept I went to orientation at the AIM office. I also saw Nairobi by day.  The smell is a cross between the humid, thick magic of a Carolina magic and the strange pugant tang that I associte with Bucharest. I am not sure if its a city smell or a developing world smell but it smells like home. Kenya has had two years of drought but its been raining and everything is green and there are many flowers.

Orientation was oddly interesting we talked a lot about the history of Kenya and plans for medical missions here in Kenya. I will write more tomorrow once I reach Kijabe. For now I am exhausted…

Correct me if I am wrong but could someone please tell me about a woman in the bible who looked like an American, fundamentalist housewife sterotype?  I can think of perhaps of two Mary the mother of Jesus and Martha.  Mary had a child out of wed lock in a culture that would stone her for it.  (um ok so maybe not like an American house wife) Jesus came to visit Martha’s family and he praised her sister Mary for not cooking dinner but sitting and talking theology with Jesus and scolded Mary for doing housework rather than learning…(not exactly a role model…)

The women that bible speaks most highly of look NOTHING like American housewives: Tamar fought domestic violence, Sarah became the mother of an entire nation/people group, Deborah was a judge and a warrior, Esther was a shrewd politician and a queen, Ruth was a caregiver and the sole  breadwinner (no pun intended) for an elderly relative (she also went and lay in a man’s bed who she was in love with to tell him her feelings for him..),  Rahab was a prostitute who descendant was Jesus,  Elizabeth proved the impossible, Mary gave birth to a child outside of marriage in a culture that would stone her for it, Joanna and Susanna ministered to Jesus, Mary (sister of Martha) listened and discussed theology with Jesus,  Mary Magdalene was a prostitute whose enduring story teaches us about grace and who also was among the only followers who were fearless enough to go to Christ’s tomb after his death, Aquila  made tents and may have been one of the first missionaries, Lydia was a wealthy, successful businesswoman who was the first European known to accept Christ she along with Phoebe were leaders in the early church….

Come to think of it maybe Paige Patterson is on to something.  The women today have indeed lost sense of biblical womanhood.  Could you imagine what the world would be like if every woman who follows Christ actually lived like these women did? (OR a if a few good men did too?)

Could you imagine a woman would shrewdly crush the head of a foreign general (either figuratively or literally, diplomatically)? Or could you imagine a woman so strong and wise that a general refuses to go to battle without her? Could you imagine if there was a woman like Esther who would go before the governments of nations where genocides, other hate crimes or gross human rights violations are happening and convince them to stop? Could you imagine if women would support their elderly, widowed family members like Ruth rather than sending them to nursing homes or griping about them?  Could you imagine if women of the world fought back against violence toward women and children like Tamar? Could you imagine if the women of the world embraced the children born unplanned or unwanted? Could you imagine if women in nations where there is no freedom of religion quietly yet openly worshiped and ministered like the women at the tomb?  Could you imagine if women stepped up as leaders yes pastors, ministers, teachers in places where there is no faith or where faith has died?

How different would our churches be?

How different would our families be?

How different would our world be?

…if every woman got up from the mud of our world that exploits women and their bodies and brushed off the  dirt of centuries of fear and ignorance  hidden in church tradition but lacking biblical substance and embraced her calling…whatever that calling may be from motherhood (yes even the stay at home kind…love ya MOM!) to ministry to beyond.

how desperate our world is for biblical womanhood….how desperate…

I am sitting curled up in one of my favorite places in the world. The ZSR library on the Wake Forest ugrad campus. Its nooks and crannies and huge windows and high callings have facilitated my studies, my imagination and my dreams for the past 7 years.  It was here I studied for my first real exam EVER, memorized latin poetry, poured over novels, drew out organic mechanisms, took MCAT practice tests, discovered libreation theology, painstaking dissected the New Testament and the Koran and eastern European folklore. I learned EKGs and neuroanatomy on the 6th floor. I learned Rheumatology and Endocrinology over in the new wing.  I dreamed of traveling and medical school and later medical missions.  And like most young women day dreamed occasionally about boys and the future and all that is to come.  This place is full of friendly ghosts that remind me of where I have been, who I am and where I am going. Its not just nostalgia and books that live here but a sliver of my identity and the woman I have become will always find a home here.  Of all the places on the Wake Forest campus I think its the place i will miss the most when I finally physically leave Winston in May.

And that is about to come to a head. Tomorrow it begins.  I submit to the powers that be my residency application. Countless cups of tea, late nights, long hours, books, papers, notebooks, itunes, sutures, progress notes and surgeries.  seven years, six pages of resume and essay, five agonizing standardized board/admission exams, four summers loving Eastern Europe and four babies delivered, three years of med school (1 to go), 1.5 degrees, it all been for tomorrow so I can go get a job somewhere in the United States that wants a gimpy pediatrician to be with a strange love for all things from the Black Sea to the North Pole, a more than passionate obsession with disability rights who is in love with children, Jesus and comparative religion.

up, up and away.

As soon as the last prayer had been said I was up the stairs and curled up in my bed with my laptop.  Kaniksha called, I answered and told her what I was thinking.  She pushed me to just do it. I went to sleep (well in theory), woke up and went to school. I sat there on rounds with this torturous hurricane in my brain. In order to do this I would have to break one of my cardinal rules of AMYHOOD. I would have to admit that I was in pain to the point that I did not think I could function at my job or at my life.  I disliked that idea immensely although my dislike was childish it still hurt to have to say that to someone.  SO I sat there with this paralyzing inner monologue and interviewed little children whose inner monologue had landed them in the pysch ward.  As soon I could steal away from post-rounds work I called the PA in Baltimore and left a short, cheerful sounding message on her voice mail. I slid my cellphone in my pocket with a smile. Sure I can try to change this but the odds were so against it working thus there was nothing to panic about. Three things had to happen: A. there had to be a surgery date in the first 8 days of block 6 (Sept 7-Sept 13), B. I had to switch my ED rotation (the only required rotation thus making it nearly impossible to switch because EVERYONE has to do it) and C. have something I can do FOR CREDIT instead in Block 6.   I walked back to the pysch floor confident that I had passed the test.

The PA called me back within 20 mins. I hid in the copy room. It took effort, more than I care to admit, to tell her the truth. My voice wavered a bit but someone by the grace of God I managed to keep a surreal businesslike manner throughout the whole conversation outlining the various pre-operative studies and labs.  She gave me the number of the surgery scheduler who I called and left a voice mail. I e-mailed student services with a bit of tachycardia.  My fellow interns on the pysch floor sent me home early since I had stayed late the day before. As I was leaving I got a completely random and uncalled for  e-mail from the pediatric rheumatologist. I had talked to her previously in the year about doing a rotation with her. It had not worked out. She had been asked to write a review on exercise therapy for kids with arthrits and myositis. She wanted to know if i wanted to do the project. I could most likely get research credit for it.  I nearly melted right there in the middle of the pysch nursing station.  Not only was a research project I could do from it home, it was a first author publication handed to me on a silver platter no strings attached. As I walked outside of the pysch ward I stared at the deep blue of the carolina afternoon with  my eyebrows raised asking GOD what the heck was he doing?

I ran home, laid down on my sofa, tired from not sleeping and the constant gnawing.  I had tried in route  home to call both student services and the scheduler again both had been apparently gone for the day.  I was fustrated. Kaniksha called to cheer me on. Finally at the point I was almost sleep my phone rang at 4:50 and I bolted off the sofa.  Ms Long the 14th has one opening…does that work for you? Holy… its in the 8 day window. Give me till tomorrow. I called student services at 4:55 and demanded a meeting with the Dean for Friday. I got it.  I then e-mailed my class expecting nothing but knowing I had to do this before I saw the Dean. Can someone please, please swicth ED rotations with me? Five minutes later someone volunteered.   The Dean signed off on my swicth, my research elective/leave of abscence for block 6 without so much as a moment of hestitation, in fact he had already done before I even got there on Friday morning.

My parents thought I was slightly manic when I called them…maybe I was a tad bit crazed. Hi Mom, I having a hip replacement on Sept 14 think you  drive me home on Sept 17?  I explained or tried to explain that for once in my life I was excercising some level of self-perservation.   My parents who know me better than most know that this is not characteristic of me…its far to what normal people with chornic pain do. They accepted it although they had a million questions most of which were medical rather than logistical.I had been the one e-mailing and calling the surgery team with my 20 million questions, I was the one who signed the dotted line on the consent forms.  Now in the surreal change of roles I was the one explaining to my parents what to expect.

I’m still not exactly looking forward to it. In fact I’m still sort of terrified but feel oddly at peace with it for the first time since that fateful day in April where the surgeon walked into the room with that knowing gleam in his eye.

On Friday afternoon I headed to Atlanata to visit with friends (including my super, awesome, talented webmaster) and take the Clinical Skills boards on Monday.  I stared at the peds rheum books stacked on my passenger seat, a reminder of the miracle of the last two days.  It rained as I was coming out Charolotte traffic, a blinding sun shower that slowed the resceding traffic to 40 mph.  I stared into the liquid blue and marveled at God’s grace and his occasional firm, gentle pushes off of our mental mountains of pride and fear. And how well he holds us as we fall into whatever ocean stands in the valley.

¹¹ For he will order his angels
to protect you wherever you go.
¹² They will hold you up with their hands
so you won’t even hurt your foot on a stone.

The passage that came to mind…oddly enough it is quoted by Satan terribly out of context in the temptation of Jesus in Luke and Matthew 4 which was the center of the discussion on the red sofa.

I walked into the pediatric oncology ward today and the first patient I met had a brain abscess of unknown pathogen origin but since she has cancer it could be a very, very bad bug. She was in a room with two other leukemia children one who was questionably neutropenic (no immune system). I was really, really upset. I get the whole limited resources concept. I get the whole this is not America concept but I can’t turn off the little doctor in my head that says this is a way to kill three children for the price of one. We painted their faces and make necklaces and bracelets and it was the only child life (hosp playroom) time these kids get. Their parents make their meals, give them all of their oral meds, wash them, clothe them and do all beside care that does not involve the IV pump. There are no portacaths so the kids get IVs perpetually. I was pretty saddened by the whole thing.

Especially in light of story number two. So ‘Mike’ is 16 and was my bosses’ first patient here back 1994. He has a stricture (a narrowing) of his esophagus. He needed surgery to fix it but he had to grow and there were no surgeons in Romania any way. Finally they found someone to do it after a more than a decade of suffering and being told that there was nothing to be done but wait for death, they found someone. Health care is supposed to be FREE for all children under the age of 18. And by FREE they mean that if you want your child to live the hospital alive after major surgery try a 3000 dollar bribe. That’s more than most families make here a year. And it needs to be in cash and by the way it’s all under the table so the doc will never pay taxes. The missionaries, the boy’s community and his parents have scrimped and saved and raised the funds. The boy survived the procedure and is in the ICU. The only words the surgeon told the mom was the esophagus was dilated before the stricture, we should have done this years ago. The mom has to pay a bribe every time she wants to see her son. 3000 under the table? And the mother can’t even be with her son???? 3000 untaxed dollars in a country where children with treatable cancer die because they can’t pay bribes for isolation rooms.

Don’t get me wrong I know America’s health care system is broken. But at least it is mostly honest. I mean insurance companies are evil but they are upfront about it. I would take truth even it means capitiolism runs health care over corruption running health care any day.

Also this http://www.wxii12.com/video/19854698/index.html watch it… and count the number of time they use the word inspiration or something similar. I know this girl, she is a friend of mine, and she is extremely kind and generous with herself. But I post this because it’s such a good example of America’s idea of disability. I can be a cursed beggar/prisoner of an institution or I can be a poster child for a Disney movie.

God Bless America……and Romania

Good grief. Dear God please tell me there is some happy medium in the world where gimpy people are not martyrs but rather teachers, parents, doctors, lawyers or whatever they want to be when they grow up. And no one finds it extraordinary that they managed but rather find it extraordinary that anyone would think otherwise.

….there are many kinds of freedom, and even more kinds of slavery.

End Rant.

Contentment is something I struggle with.  Being content with waiting on God or wait on public transport or simply being happy with I have at that given moment. Its so easy to give into complaining or whining about what I wish could happen faster or what I wish I had or what I wish could be different.  There are so many things I want and so few things that I don’t have that I actually I need.  You go to any book store and you will find oodles of books about finding peace and contentment.  And there are a great variety of such books in the religion section alone from prosperity gospel to physics to magic formulas, but no ONE HAS AN ANSWER….

God provides in his own time, his own season and his own way or so we are taught in church.   But how do we learn to wait, to trust. Oswald Chambers says the most important word Christ ever spoke to his disciples was abandon.

What does abandon truly look like?  Can we truly be joyful and grateful for what we have and live in the moment? Can we drop everything and truly live with abandon? Reckless abandon??

So different from what our culture tells us…and in the end I think thats the key. Its recklass abandon of what wer are told to worry about, told we should want and need for instead embracing what we have and what God has for us.

I am not sure what that looks like exactly but I am praying God coninutes to show me.

The truth is I have to be realistic.  I’m like a football player with a torn ACL that refuses to quit playing football. I will be an intern in T minus 16 months inless I want to be in debt 50,000 for nothing. I want it. I do. Even though I know what it will cost me in cartilage. I want to be a doctor.  So hip surgery is my best shot of internship not becoming a death march for the rest of my joints and my sanity.

When I was a kid I am sure there was ambiguity about what was right in terms of surgery or no surgery. In fact I even remember the conversations especially around the first big one. But I was a kid and I believed in Santa Claus, the Easter Bunny and the Tooth Fairy and medicine. Oh how I believed in medicine.  Now I have become a priest of medicine of sorts and I realize that the magical, all powerful healing wizard behind the curtain is actually an army of humans who make mistakes, have bad days and never eat or sleep but still cut on people’s babies.

I also grew up thinking less than one in a million diseases are way more common than you think because I was less than one in a million and so were my friends.  I could name 20 people who were less than one in a million.  I also was a military dependent which means I got to go see the big shot orthos for free (and by free I mean thank you US Tax payers!). Sure my pediatrician and all the residents had never heard of Kniest or operated on any one with it but my orthos knew about it and had experience with it. I lived in a happy world where I had faith in people who were bigger, smarter and more  magical than me.

Now I am an adult. An adult in medicine no less. Who knows that while less than one in a million is common in my life, in adult medicine you are as prevalent as aliens from Pluto who are protesting its deprivation of planet hood.   Adult Orthos look at me with fear in their eyes. FEAR. from orthopods who have egos the sizes of small european countries.  They look at my flims and audibly gasp (really I watched this…I will dig of the post from 4 yrs ago and link it later) and say bad words which I shall not type.

I do somewhat like the dude in Baltimore that my peds ortho sent me to because he treated me mostly like a human and not as an alien. But he is famous and in demand because he pioneered hip resurfacing in the US.  He doesn’t answer my phone calls or e-mails. This is the procedure I need. He agrees I need it. One small detail he left out when we dicussed this 4 yrs ago (we were dicussing as a future proceddure in the next 3-5 years), he has never, NO ONE has ever does this procedure in a person with Kniest or SED or any related disease. I spent weeks looking everywhere, talking to everyone I know. The truth is out. Cong. hip dysplasia yes.  Chondroplasia (beyond early OA) NO.  Its a new procedure (FDA approved in 2006, in clinical trials since 2000, been in England for a while). And the truth I am tall, so tall.  A LP would be at higher risk for this.  Thats why I am the lucky millionith customer.

Um, wtf? How do people make these decisions? I mean I want the procedure really i do. It buys 10 years of Romania or Kenya or whatever. I want it. But I am also terrified about it.  Because I don’t believe in the magic. I know the raw, carefully calculated and learned skills of medicine.  I know that there are no sure things and God knows that I know that less than one in a million odds happens. And he also  knows that I am good at doubt.

Over break I went through my medical records (I have my own small archive of films and records taking up an entire corner of the attic) for the first time as a medical student. It was surreal, the words were familiar to me. I speak the language fluently now, grammar, the note structure, the acronyms all make sense. I was looking for my original audiogram (hearing test) and the Kniest diagnosis paperwork.

I had never read the 10 page genetics paperwork fully. Anyone who has ever had any exposure to genetics knows that geneticists are meticulous (I spent a week on it during peds). They look at ever freckle, every toenail  and scrutinize it for answers of what  kind of biochemical diaster you are… I found it, read it, copied it and put in my folder with my audiology stff (hearing aide stuff), letters from the Dean, my high school IEP (plan for accomdation for a student K-12), Wake and my Rheumatologist’s letter. Today I stuffed it in an envlope with a personal statement (yes they require this) explaining my disease, my good standing as a medical student, species, etc. And for some odd reason I felt violated.

I mean the whole thing is ridiculous…I mean would anyone really tell a disabled person they couldn’t take their wheelchair or hearing aides….I mean this exam (which 95% of US grads pass) is one of the tests that decides if I get to be a doctor to deprive me of my hearing aides in particular would severely hurt my chances of doing well. The fact I have to prove to the NBME I need them is just flat out laughable….or is it…see sometimes I forget.

I have forgotten the awkward admission questions, the fact that my friends get rejected because of their disabilities, i forgot the surgery attending who stopped me on the elevator last July to ask how the heck I thought I was going to pass his rotation or the int med attending who stopped rounds half way through on my first day on the service to ask what my limitations were (in front our entire team, nurses, etc) or the peds attending who is a former AAP president who asked me in the middle of morning report what page are YOU on in Smith’s Book (the illustrated peds bible of  genetic syndromes…I am pg 412 (I think)  of the newest edition).  Oh right…I have forgotten I am actually reinventing wheel…

I’m sorry but is it too much to ask to have something sacred here??? Is it absolutely necessary that the people who write my medical liscene have to know every freaking birthmark, freckle and toenail I have???  Do I have no right or privacy…HIPPA applies to everyone except patients who want to be doctors (or lawyers from what I have been told).

and unfortunately its not just the NBME…This week I e-mailed my Rheumatology (arthritis doc) fellow  a question, he is a really decent doc who I really respect. I mentioned my pain had been worse in the past few months on medicine. He wrote me back an answer to my question and then mentioned that my medicine clerkship director (NOT RHEUM) happened to be sharing clinic space and overheard the fellow talking to the Rheum attending about me.  She apparently had a conversation about me with the Rheums, about my work (good, she says) and her sincere desire for me not to be abused on her rotation (good intentions yes).  I know she meant well but if I wanted her to know I would have e-mailed. her .  You know maybe I didn’t need the person writing my medicine grade and comment summary to know the imtiate details of my chronic pain issues.

sigh.

I could go into a long rant about power issues and about history and how such information could be used aganist me by insurance people or yes gatekeepers who have often historically been physicians who made decisions for my tribe without our input. But really its not about that.

I am not ashamed of any of it, I am not afraid of persecution, there is nothing to really hide…I just would like to be a student doctor…who yes happens to use a wheelchair but who mostly just happens to be a  third year medical student who is a decent one at that.

Yes I really would just like to be a medical student.  Why must I keep proving my right to do that?

yes I am a medical student  with a wheelchair, and a big medical file and hearing aides and FLK on my birth certificate.

it time for the world to get over it…I mean at least by the time I graduate.