mutant anomalies……..

Its hour 5 of spinal surgery.  Surgery number three in my two days of marathon complicated crazy skeletal dysplasia cases.  Even though I have been given a stool to sit on. I am tired. Shivering and Sweaty from sitting in one position all day.  It has been an almost DISASTER case, we loss motor signals and for a few terrible minutes we thought we had robbed a little girl of her ability to move or even breath…I prayed the whole time terrified of the power we had over these lives. All I could think of was the conversation we had when she fell asleep about how she liked to read June-nee B Jones and how her Dad hugged her before he left her.

We are closing.  Its me the fellow and the resident. The fellow talks about how much he loves children and resilient and adaptable they are.  I agree with him and smile down at our young patient so  grateful for her resilience today.  Then the fellow goes on to say that eventually around late adolescence he finds his patients changing particularly his special needs patients they lose their adaptability…they become lost. He steals a glance at my eyes and says Did that happen to you, Amy?  Before I can answer he says ” But you are tough.”  There were a million things I should have said. I should have talked about transition and how hard it is in a world that does not make niches for disabled adults, where there is no health insurance, where adult doctors are terrified of you and you have to go from being a cute, pitiful disabled child to a dependent adult who feels worthless in a world that does not have a place for them. But my pride got in the way….I stood there with my shoulders back, head held high and told him that the way i thought about life was simple I figure out what I want and I figure it out.

He smiles.  I am not a good surgeon. Surgery is right up there with ballet dancing in my world. But these people respect me in a strange way, as if I was a really brilliant surgeon.  Maybe its because I am a good clinician, maybe its because there are just nice folks. Or maybe its because I prove that what they do is worth it. That spending 7 hours on a 7 yo with a disease you have never heard of whose neck is collapsing matters.

The surgery ended and we did one more. Then we had clinic today. One of my Kniest patients came back after two weeks of rehab. We have become friends, I spent nearly every other night with them since they have been here. The little girl has asked repeatably if her Dad can adopt me.  I took her history close to the end, she looks right at me and says YOU WANT SO MUCH INFORMATION, YOU ARE A SPY.  The NP who works with my attending was just outside the room at that moment and tells the little girl that I WAS HER SPY.  Its true….Its true.

I am a spy. I am a spy in the OR from the land of patient. I am a spy in the exam room from the land of doctor.  In both worlds I live but in neither do I fit in entirely. My knobby hands and stiff wrists and tired knees give me away in the OR  and my knowledge and curiosity gives me way in the exam room.

for a moment I felt a little homeless. a little lost. a little in limbo between my parallel universes.

in the end I looked over at my young patient and I smiled.  I am well informed my friend.

Because I know how scary it all it is, how vulnerable and how big the risks that we take with the fragile children that are entrusted to us but I also know how tough we are, how hard we  are willing to fight and how much it matters.

H1N1-Swine Flu is Overrated

2000 deaths a day nearly all children.

853,000 pediatric deaths a year.

this is not swine flu.

this is a disease that is completely curable.  it also doesn’t exist in the developed world.

Malaria.

lets compare shall we…

Swine flu has caused 6250 deaths since April ‘09.

3,900 Americans. **

thats the kicker.

80-90% of the malaria deaths are in Africa.

so the next time you see one of those glossy articles about swine flu or five minutes spots about just how bad swine flu is..think about the value of a life.

Every three days the same number of children die as all the swine flu deaths combined.

Does the life of an American child mean more than the life of an African child?

You know the answer to that question and you also know that CNN is never going to report about in a glossy five minute media spot.  Because no one likes to know about dying children

It so much easier to forget they exist.

I too am guilty of this. For the last six months I have taken notes in lectures, carefully masked and gowned and prayed that my little patients would not end up in the ICU.

I took the h1n1 vaccine along with my other classmates three weeks ago.***  We have been chosen, our young age, our knowledge, the investment the state of NC and the federal government has made in us and our daily exposure makes us first in the line at our hospital even over residents and attendings.

Yesterday I was all in a tizzy because I woke up with a fever, body aches, cough, sore throat and my roommate is recovering from swine flu. Student Health was all in a tizzy too as they listened to my history and promptly wrote me a script a 120 dollar script (20 dollars with insurance) for tamiflu.  I am faithfully taking the drug.

Its not what I am doing is wrong. I just can’t help but wonder what kind of difference we could make in saving the lives of children if we had the backing that swine flu has.

What if for every dollar we spent on swine flu, we sent a penny to Africa for malaria cures?  How many lives would we change? save?

Does a death require less grief if no one knows it happens? Or can we be held accountable for the lives we could save and don’t?

I shudder to think of God’s justice and how much it pales our own man made justice.

Somehow I doubt he is going to buy the whole tree falls in a forest with no one to hear the sound excuse….

**(right NOW swine flu is spreading to the developing world more and more, Ukraine and Mongolia are facing huge numbers with the disease. In Mongolia the WHO fears it could overwhelm their health care system but for the last six months while all the money has been spent, all the decisions have been made its been a developed nation disease…I wonder how many vaccines are being sent to Mongolia???)

***(there is a 2-5wk window period for the vaccine to give you full immunity, my roomie got sick at the end of week 2 so I was not fully immune yet)

Traditions…..memories….nostagia

My family loves traditions.  Making our family Christmas gifts, singing off key on each other voice mail on our birthdays,  the annual cousin Christmas play, dying eggs at Easter, red velvet cake on my parents’ birthdays in Feb, Red Lobster for my sister’s, advent calenders, trivia at the dinner table, lunch after church and I could go on. We mark our milestones and holy days as a family with joyous rituals  always remembering years before variables on a common theme.

Preparing for major orthopedic surgery in my family has familiar rituals  too because its been a somewhat frequent occurrence in our lives.  Some are very practical, some are down right silly.  Its been  a while but one would think it was just last year if you watched how quickly we all fall into the roles we know so well. My Mom sets out arranging things even with me signing consents and doing most of the arranging now she still finds ways. Dad reassures Mom, me, himself with daily pronouncements that everything is going to be ok.  Emily and Tori shuffle in and out of the dialogue offering books, chocolate and wanting to know long i will monopolize all of our lives (my primary question as well) particularly my parents’.

I go to the library stock up on books,  DVDs, audiobooks,  stock up on food. As I packed my car this morning. I  packed pillows. I went to target and bought new undergarments and socks. I found my one pair of shorts that I own and stuff them in my suitcase.  I plan the traditional ‘last meal’ via google and decide on wine and crab cakes (it is Maryland after all).  All the paperwork has a folder, all the appointments are made and all the necessary items are purchased.  I then of course am now taking the traditional joy ride which has expanded considerably since childhood with my driving ability and all terrain vehicle.  This time it will include a week of visiting, going to the beach and general traveling.

And just like with all rituals and traditions…I remember.  But they are strange memories as I suppose all childhood memories are to some degree when we looked back at them with  adult reason and knowledge. The last time I had major hip surgery I was 13 and although some times I thought what it would be like 10-50 years from now, most of the time I just wanted to be able to go through a whole year of school without having to be on home-bound.  I wanted to get through a Spring where I didn’t break a major limb to pieces over something ridiculous like walking the stairs.  I wanted to be able to stand for a whole play or walk my dog or go hiking with my family like I had when I was younger (5 yo- 10 yo). Frankly, my life was pretty awful between the pain, the social isolation and lost of the abilities to do many, many things I love. I was begging for surgery.  It made so much  sense.

But now my desires are so much bigger, I haven’t been ’sick/injured’ from Kniest in a decade other than an occasional minor mishap. I have traveled the world, graduated from college, live independently, drive a car and do crazy things like ski and play doctor.  And I don’t want to stop any of those things, moreover I want to do more like live overseas, complete a residency, get married, have kids, raise them, etc,etc…  Handing over my life to the hands of a surgeon is so much more difficult now. The stakes are higher, the leap is so much scarier.  Its not about just making it off the ground it, its about finding my way back to  the lofty altitude I have been cruising at for the last 9 years.

The roles are the same, the rituals are the same but the dance is so much more complicated than I remember.

The view from ZSR 6th floor on the eve of the rest of my life…

7 years is a long time.

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.

Why the world is messed up Part 1

I love this country and only God knows why.

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.