Saturday, November 3, 2012

Politics is as personal as ever, day 17: What would we have done without insurance?

          When our youngest son, Ankle Biter, was 15 months old he spiked a fever and started to cough.  This was not so unusual for February in Portland, Maine.  And it was a Wednesday, so I wasn’t very worried.  I called the doctor just in case there was something horrible going around that we should know about.  There wasn’t--just February--so we agreed the best thing was to give it time.
          Thursday was the same.  Temperature still elevated but no higher than the day before.  Symptoms unchanged.
          Friday was no different.  Except it was Friday.  So I called to ask if I should bring him in.
          “Does he seem like he needs to be brought in?”  The triage nurse asked me.
          I don’t know if she was annoyed, but I heard her that way.  I felt annoyance coming through that phone.  Which probably has more to say about me than her.  I felt like an alarmist bringing in my kids all the time.  Is there something we can do about the red bumps all over his body?  Is it normal for them to be wheezing like this?  Why do their bowel movements smell like sour yogurt?  It seemed like with three kids there was something to call the doctor about every week.  And we were still bringing them in for quarterly well child checks.  So I felt like she was calling me a bad mother.  Like I couldn’t figure out myself how sick my kids were.
          But it wasn’t just that.  Our income at the time was low enough that our kids were eligible for Maine’s version of SCHIP, the State Children’s Health Initiative Program. (Thank you Ted Kennedy and Orin Hatch.  Remember when a staunch Republican like Orin Hatch could work with a Democrat on landmark health care policy?)  So there was a little bug in the back of my brain that felt judged.  Like if I took my kid to the doctor because I thought he had an ear infection and it turned out he didn’t, then I was wasting the tax payers’ money on an  unnecessary office visit.
          So that Friday I heard annoyance and I decided to stay home.  We would see how our little guy did over the course of the weekend. 
           By Sunday evening he would do nothing but snuggle on my back in the Ergo carrier.  If I took him out he would lie down on the floor.  If I put him on the couch, he would lie down on the couch.  So by midday on Monday, when he lay in my arms, grunting at the end of each breath, I strapped him and toddler Moon Boy into the car and headed confidently into the doctor.
          And that doctor did everything right.  Honestly, I want to weep every time I think about how right that doctor was at each turn.  She immediately recognized his grunting as a sign of a blood infection.  (Who knew?)  She was ready to give him an injection of antibiotics right away to start fighting it off, but knew they’d need to get his blood before he received the antibiotics or else the sample could be a false negative.  But our pediatric office (like most) does not do blood draws on site.  We’d have to go to a lab for that.  Me and this beyond sick baby, and a toddler.  And it was about 15 degrees out.  Except here came the doctor, out of the supply closet with one of those tiny butterfly needles, the nurse staring at her in wonder.  Clearly this was not routine practice in this office, but that doctor got our tiny boy’s vein on the first stick.  So by the time we’d left the office and were on the way to urgent care for chest x-rays, he already had his first dose of antibiotics on board, and his blood was on the way to the lab.  When we arrived at urgent care they knew we were coming and took us immediately, and I had barely arrived home before the doctor was on the phone saying she’d seen the x-rays and admitted Ankle Biter to the hospital.  When we arrived twenty minutes later our room was ready and the doctor was in it.  Waiting for us.  She showed me the severe bacterial  pneumonia filling his left lung and confirmed the infection in his blood.  When I cried and told her how many days I’d put off bringing him in, she told me there were plenty of viruses going around.  They wouldn’t have treated him until the fifth day anyway. 
          As it turns out, we spent the next ten days in the hospital, my partner, Darling Virgo, and I switching off laying in the hospital bed, holding him in our arms.  After a CT Scan on Wednesday a half dozen MDs filed into the room to tell us his body was working its hardest to protect itself against infection, and had began forming what is known to the medical world as an empyema.  It was described to us as a barrier of pus the consistency of Vaseline, that forms a wall between the infection and the rest of the body.  If left to itself the Vaseline-like-gunk will form into something as hard as the white stuff on the inside of an orange peel.  And just as thick.  Presumably the body does this because it is helpful, but if that wall is going to compress your lung, then it’s not very helpful at all.  And that’s what was happening to our little guy.  So suddenly, laparoscopic surgery to remove the gunk was scheduled  for that Thursday afternoon. 
          And it was all beyond unnerving.  The doctors filing in, primary care, surgical, infectious disease, and then just the regular residents from the floor.  And a new nurse to get to know every 12 hours.  With a slightly different way of doing things.  And what can you do but put your faith in them all to know what Vaseline-that’s-going-to-turn-into-orange-peel looks like.  To know that cutting our son’s body open in three places, snaking in a camera and two tiny little shovels, is the best thing for your child.  The thing that’s going to make him better.  The thing that’s going to keep him alive.  It’s such a big leap. 
         But by the time Thursday morning arrived, there was no denying he needed this procedure.  His body was so swollen with fluids that he looked like a newborn with those huge puffy eyelids.  In fact, as I held him through the morning, I began to forget that he wasn’t a newborn.  He was so lethargic, so uncommunicative, I couldn’t remember that he could usually understand me.  That there were things that made him smile and laugh.  That prompted him to crawl across the room faster than a happy puppy. 
          And we had the most wonderful moment with the resident and med student would be assisting with the surgery.  They came to see us while we were waiting in anesthesia.  And suddenly, without the big wig surgeons around them, these two were just regular people.  Our generation.  Our style.  We learned the resident had a son about the same age as Ankle Biter.  We laughed together about our crazy toddlers and could just feel that as they were becoming real to us, so were we to them.  Ankle Biter would be a child to them, not just a patient.  As they stood to leave, Darling Virgo grabbed the resident’s arm.  “Imagine he is your son,” she told him.  “Just imagine if this were your son.”
          Well the surgery went perfectly, and when they wheeled that boy into the recovery room, there was so much tape holding his drainage tubes in place it looked like he was in a full body cast.  The nurse kept commenting on how excessive it was, but when the resident made his rounds he told us, “all I could think of was my son and how he’d pull those tubes out in a hot second.  So I just covered him with as much tape as I could get on there.”
          It wasn’t long before that boy came back to life.  They removed one drainage tube on Saturday, and the next on Sunday.  And by the time the morphine cleared he was crawling around the hallways with a brace on his arm to protect the IV.  Like a little happy puppy with a peg leg.
          He/we were in the hospital ten nights in all.  On his last day they put a PICC line in his arm so he could continue to receive IV antibiotics for two months.  Which meant two months of home-visiting nurses checking that line.  And return visits to the hospital for follow up x-rays.  And weekly blood-work to monitor the infection. And ongoing check ups with the infectious disease Doc.  And to primary care to remove the stitches.  And then of course, when little Ankle Biter finally learned to walk at seventeen months, he walked with one arm tight to his chest to protect his tender wounds.  And so then that’s just how he walked all the time.  And that’s how he ran.  One arm swinging along with his stride, the other cramped up against his body as if he were holding an important deposit under his arm.  So there were physical therapy consults.
          And all of this (you are a good sport if you’ve made it this far) is to say: What would we have done if we didn’t have health insurance?  Tell me what.  I mean, we did everything right.  And the doctors did everything right.  Everyone was taking care of this kid at every stage, and still, there he was with a mass of gunk about to compress his lung.  What if we’d had to worry about that very first call to the doctor’s office.  What if we had to think twice before making the appointment because we knew there’d be an office visit bill to pay.  And then an x-ray bill.  And then (bam!) in less then eight hours we were looking at a night’s stay in the hospital.  Day one of medical care and we would have been up to a couple thousand dollars at least.  What if we had to weigh the necessity of spending that $2,000 as if we were considering replacing a water heater that might still have a year left in it.  What if we’d spent even a day shopping around, while our son was getting sicker, while that stuff was hardening around his lung?  And even if we’d just gone ahead and done everything the doctors recommended, everything we actually did do, on that same timeline.  We would have been going out of our minds.  And that’s just it, we already were going out of our minds.  Our tiny little child was critically ill.  Imagine if on top of that we were watching as ten, twenty, thirty, forty thousand dollars in medical costs was tunneling its way through any hope of financial solvency.  Ever.
          So when I think about all those people who stand to lose their health insurance on Day One of a Romney presidency, it makes me so sick I might just need to schedule an appointment for myself.  Young people who are on their parent’s plans.  People who’ve reached their lifetime cap.  People with pre-existing conditions who have been emailing me since I started this series.  People with lupus, or a hip replacement, or high blood pressure, or diabetes.  These people who can’t change jobs because a new job would mean a new provider and a probable denial of coverage.  How is that supportive of free-enterprise?  How is our economy served when people are kept back from professional advancement because a job change would mean a forfeit of insurance coverage?
          I imagine these families, some of whom will one day cradle a sick child in their arms and kick themselves for worrying about the expense when all they want to worry about is their child.  Elders with Medicare vouchers who will think twice about calling the doctor, wondering if maybe they’ll feel better if they stick it out just a couple more days.  There are still plenty of families out there who are living this predicament as it is.  Why would we undo the progress we’ve made, instead of continuing the work of insuring every family against these kinds of dreadful decisions?


  1. I've been following and enjoying this series very much. This post took my breath away. Brava. Thank you.

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  3. Wonderful, thanks from me too. Tweeting and forwarding to those I love.

  4. You're like a voice in the wilderness! Thank you for this.

  5. You're like a voice in the wilderness! Thank you for this.

  6. I am so glad you had such a positive experience with the medical system! Such things are rare - up here in Canada, I have yet to have such a positive experience, and I'm off my MS medication because I have no insurance (and am unlikely to ever be able to get any). I can gay-marry my partner all I want, but because we're both self-employed, we can't ever get more than basic health coverage.

    Our Prime Minister is more Romney than Obama in character, so all I can say is, Obama for Prime Minister! (If you don't vote for him, we will.)

    I'm definitely a fan of your blog. Keep up the good work!

  7. Thank you for your inspiring stories about parenting.
    I expected it because... Elderly, Florida on food stamps, SNAP.
    Thank heavens, I have read Kafka and yes, I have worked
    since I was in junior high school to save for college.
    the facts:
    1.)food pantry - diarrhea. NO green veggies, not even cabbage.
    2.)keep asking the grocery stores, with many workers who have a
    'blank look' in their eyes. considered dumpster diving, but it could be a crime of trespassing.
    3.)SCIENTIFIC NUTRITION. walking and bicycling to job interviews,
    with no car access. Candy bar has less glycemic sugar FOR ME
    than does 'white rice' and REMEMBER every person is different.
    For example, the Alaska Indian Eskimos eat mostly whale blubber
    or PURE FAT and few fruits.
    3.)most of the food available at the food pantry, churches and
    even at the grocery store is processed, made with GMOs and practically guaranteed to cause SICKNESS.

    4.)i don't believe it is a conspiracy to cause sickness, but who
    knows? part of the Medical-Big Agriculture complex and the 'Military-Industrial Complex' and the 'Bad Schools - Prison Industrial Complex.' Of course, the FOOD STAMPS/ SNAP folks ask
    HAVE YOU EVER BEEN ARRESTED? No, it is not have you been
    convicted of a VIOLENT CRIME. Arrested holding up a political sign? Tough luck.. no food.

    8.)New York City - the great planning by the centralized federal
    government results in
    a.)restaurant and grocery store flooded. Throw out the food.
    Hungry people hunt through the dumpsters. The Hospital ER is
    filled with sick/weak/food poisoning humans.
    b.)FREE HOT DINNERS ARE SERVED AT THE restaurant and grocery
    stores. Each eater must SIGN THEIR NAME to a list and the
    insurance company is reimbursed at a DISCOUNTED RATE by the gov't.
    Local, UNEMPLOYED workers bring their own propane bottles and stoves.
    c.)uses local resources. No need for expensive overtime by
    the National Guard. Expensive, NOT DIGESTIBLE MRE. Ask the
    new army recruit who went to Iraq. Despite the FREE MRE - meal
    ready to eat - some soldiers AVOID THIS BECAUSE IT UPSETS THEIR
    d.)the food wastage in America has been documented in books.
    Of course, the 'extremist political party' only shows on TV the
    FAT PEOPLE buying chocolate bars on their food stamps/WIC.
    e.)SCIENCE nutrition studies show HCFS - high corn fructose
    syrup is likely the BAD CULPRINT and it MAKES UP MOST OF THE
    'food assistance' - moldy cheese, peanuts, etc - WIC.
    f.)comparative INTERNATIONAL STUDY. the productivity of the
    Asia INDIAN WORKER is low in New Delhi, India. Why??? The
    food in Communist China, PRC is nourishing and it appears they don't eat a lot of meat.
    g.)in most cities, only the local FARMERS MARKET and the
    local India-towns and CHINA-towns are the best places for 'nourishing food.'

    Welcome to the GREAT COUNTRY OF AMERICA.

  8. PS. challenge to all economists! Economics show:
    1.)cheapest way to sell high quantity contract with LOW QUALITY
    is to the School Lunch Program or the WIC or 'someone who does
    not complain.'
    reference: High-Level Rent Seeking and Corruption in African Regimes

    2.)statistics shows a VERY HIGH CORRELATION between lobbyists and
    the contracts awarded by the government. very strange, no??
    local, small farmers usually never get a chance!

    3.)Would the average customer buy the 'moldy peanuts' that cause
    LEAKY GUT SYNDROME (fatal for the infants, your children and
    the elderly)??? Would the average customer buy the HORMONE FILLED
    and BGH laced cow milk, rather than soy milk?
    I am of Asian descent and most ASIANS, Chinese NEVER DRINK
    MILK as an adult, because of GENETIC LACK OF lactase enzyme.
    Thank G-d. I am not diabetic. I have eaten rice and beans,
    2 or THREE TIMES A DAY. Rice is very high on the glycemic index,
    but better than WHEAT, CELIAC PROBLEMS OF BREAD.

    4.)Hey Supreme Court Justice. I am sure you are a genius and
    very high paid. Maybe you slightly overlooked one thing. - Nice
    way of saying you don't get it!!
    Supreme Court Justice Antonin Scalia ruled that the law was fair and provided “equal protection” to all voters because “seventeen miles is seventeen miles for the rich and the poor.”
    Hey thanks for the scholarship and investment in college, USA!
    I quote Voltaire/others:

    Food is personal and unique. Why not only give out pork so as to
    cruelly deny those who as kosher Jewish or devout Muslims?
    Even the Roman Empire, Rome quote: 'De gustibus non disputatum.'
    Do not dispute an individual man's choice.