Top 10 Surgeries This Christmas Season!

Many of you know me through my work in medical advocacy via writing, speaking or art.  But a few of you know me as Reggie, the red haired gal who worked at the toy store Barston’s Child’s Play for 12 years.   Every Christmas season since Fred died, I have come back and helped out during the holidays.  I slip back into my role in retail sales, with a little comfortable sigh.  It feels like slipping into a favorite comfortable shoe.  This is the job I have done most my adult life.

My current job as a patient advocate can be scary.  I fly to places I have never visited to speak to people I have never met.   I then pour out my soul using a paintbrush and a voice.  I think all those years at Child’s Play prepared me for the work I do today.

It is the holiday season and people come into the store with lists of the hottest new toys or with a copy of The Washington Post gift-giving guide in hand.  And they ask us “Do you have this or that?”  Often our answer is: no.  We tried out that toy and it was not good enough to meet our standards.  It did not have enough play value or it was poorly designed. 

I wonder what people would think about a headline that read: “Top 10 Surgeries this Christmas.”  I hope they would be aghast.  I hope they would not pick a surgery merely based on its popularity.  Yet, people often pick toys this way and it makes as much sense.

See, Child’s Play is a specialty toy store.  We ask you questions, we suggest products based on a child’s interest, age and ability.

I chuckled at @midewifeamy or Amy Romano’s Facebook status line the other day:

“My goal this year is to choose holiday gifts for my kids that will make them really happy and bring them joy, and that are not gross mass marketed garbage. I'm OK with popular toys but I think they should be popular because they're really fun or engaging. So, share your favorite gift ideas for 5-7 year olds. I need ideas.”

Amy is my kind of customer, she is asking for a toy that is a good fit for her children.  She is as much an informed consumer as she is an informed advocate. 

Yes, years of working at Child’s Play taught me many things.  It taught me how to listen.  It taught me how to gather information and prescribe just the right toy.  And it taught me how to have hard conversations.

Recently, I posted a blog about Engage with Grace, living wills and end of life.   That post was cross-posted by Disruptive Women in Medicine.  Whilst looking at the cross-post, I read another article by Randi Kahn, Amplify team member, on palliative care, end of life and the barriers that prevent providers from having hard conversations with their patients. 

Disparities in End of Life Care and the Barriers that Facilitate Them 

In response to the article, I thought of Child’s Play and specifically Steven Aarons and his wife Simmie Kerman who are the store managers.  I thought of the many years they modeled how to have such conversations and gave the space and time to allow all of us to address these traumatic moments in a life.

A lot of our toys are used by occupational therapists, speech language therapists and child psychologists, many of these professional refer parents to our store.  We also get referrals from local private schools and testing services.  We often help customers in the moments after they have been given the devastating news that their child has a learning disability, sensory integration dysfunction or autism.  

We gently show them potential choices that might help with therapeutic play.  During these consultations, I have often helped a customer for over an hour even though they only buy a few items.  The parent often needs the conversation more than the toy itself.  It is hard but it so worth it.  It is such an honor to help people at such a point in their life.

Sometimes no one has told the parent why he or she was sent to buy such toys. 

Sometimes we have to have the hard conversation.

I will never forget the day I helped the young mother.  She came in with a list of toys to help practice for a test to get into a new school.  I began to ask her what she meant by practice.  She informed me that her child had been tested so he could get into a private grade school.  The testing proctor said his scores showed “scatter.”   And the child could try again in two years, and meanwhile he could practice.  I looked upon the list of toys.  It was an amazing sale, if she purchased it all, the sale would total well over $500.00 dollars.  My eyes scanned the list again and I began to grow concerned.  This wasn’t a prep list for the child of an over-achieving helicopter parent. 

This was a very specific list.

Then I began to ask questions.  “When your child was small did he spin wheels?” She nodded her head.   “Did he talk early or was it a little later?“  “Later,” she said.

“Did he or does he still have an interest in just one topic like trains, insects or dinosaurs?” 

She smiled at me and nervously nodded, “Yes!  He loves trains and talks about them all the time.  He has for years and he has every Thomas the Tank Engine train ever made.”

I looked down at the list again, took a deep breath and then looked into her eyes.  I looked into eyes that seemed frozen in a moment, balanced on a tipping point.  Her eyes were brimming with emotion and the tears were held at bay because I had not asked the final question.

“Do you think your child might have autism?”

Then the floodgates flooded opened, and she began to cry.  “Oh, I do. I do, “she sobbed.  “But no one ever says it.  What will we do?”  I took her hand and told her I understood. 

I did not sell a lot of product that day, but that was not important.  It was more important to help this lovely woman, and to have the hard conversation that she had been denied.

The other day I tweeted “The problem with medicine is not that is run like a business, but that it run like a bad business.”

When I began medical advocacy, I began it with the same sense of outrage as Alex Fair before he created FairCareMD.  I painted about how Fred was treated because he was treated so poorly.  What good business would treat customers so? 

If you walk into Child’s Play, within moments you are greeted.  If you do not immediately ask for help and receive guidance, you will subsequently be asked by every other staff member if you would like help or if you are finding things alright.  We will guide you through the entire store showing age appropriate choices with honesty and candor.  We will wrap your presents at no charge and help you carry your large purchases to your car. 

Juxtapose 12 years of that kind of service, to our eleven weeks hospitalized.

Imagine if you will the nice lady from the toy store waiting at a nursing counter begging for a thermometer for her feverish husband and being denied.    Imagine a clerk that had maintained and helped install a point of sale systems begging for access to the electronic medical record.   Visualize my surprise at being mistaken for a new staff person by the ambulance transport crew as they picked up my husband from the rehab facility.  I had greeted them at the door, guided them to my husband’s room and helped with the body lift.  They were so happy I had been “hired.”   They had never been greeted before or even made eye contact with the front desk staff, without waiting a considerable time. 

I am glad I get a chance to work at Child’s Play this Christmas season.  It reminds me all the more of that the high bar I have set within the world medicine is attainable.  

Amy Romano's Jacket: Near Miss Mom

If you have ever seen me paint, you are probably quite aware I don’t tend to sketch.  I don’t believe in a do-over, and I do accept organic change within a piece.

I use pigment and brushes and look within, and then begin the painting.  My mind is sort of like that scene in Inception where the landscape changes and morphs into the finished design.   But before I design, I must SEE.  I close my eyes and look back and sometimes sideways or forwards, to find those pictures that create the image; that tell the story.  I see the images roll by like some kind of frantic calliope.  “That one,” I say.  “I will use that dart I played with as a child within this painting.  I will use those warm comfy socks upon her chilled and bloodless feet.”

And so I paint, often on site, within a swarming crowd or upon a city street or at a busy conference.  And I see them out of the corner of my eye: the watching ones.  My peripheral sight warns my animal mind of impending attack or possible collaboration.  My intellectual mind says all those reassuring things.  “Don’t worry they are only watching.”  Occasionally I will spin around upon those too close at hand.  My nose slightly flaring, my eyes dilated.  I see everything.

The eyes are so important. 

Anyone who studies health and medicine must greatly depend on their eyes and the eyes of those they care for.  They depend on their vision to accurately diagnose patients and to foresee impending problems.  I remember Fred’s eyes before they closed forever.  Such beautiful eyes, when they looked at me through love, I could fall forever in those black depths. And they were such scary eyes when they constricted as tightly as a python through a haze of opiates.

Sometimes I focus on the scary eyes.  And that phrase heard on television time and time again echoes in my mind: “Pupils-fixed-and-dilated.  Pupils-fixed-and-dilated.” It rolls off my tongue, like letters recited by a child: “l-m-n-o-p.”  It has been said so often together that it has become one word.

But let us dissect this.  Pupils fixed: not responding to light.  Dilated that was nine days ago when Near Miss Mom gave birth to her baby.

For this is a jacket story.  And I want you to look into these eyes. 

This jacket is a story of birth and consequence: the telling assisted by a midwife.  This is @midwifeamy’s jacket or as her local friends know her Amy Romano.

I met @midwifeamy on Twitter on September 14^th 2009.  I enjoyed her tweets about woman’s causes and childbirth.  She is a powerful patient advocate.  I met her in real life about nine months later.  We were on the same patient panel at Health 2.0 Goes to Washington.  I told Amy I would blog my birth stories sometime soon.  But time and life got away with us and my Isaac’s story remained untold.

You see when Fred went to the first hospital where we fared so badly, I was already familiar with it, as I delivered Isaac there.   In January of 2006, I was trying to maintain my pregnancy.  I had begun pre-term labor before Thanksgiving, and was carefully watching for contractions.  My OB told me that as long as I drank water constantly and didn’t lift anything I should be able to make it to 36 weeks. 

In late January, I woke to find Freddie sick and I needed to go to my OB appointment.  So I took the bus and then the train to my appointment, where I was told that I was beginning to dilate but had not dropped.  I took the train and the bus back home to find Freddie running a 104-degree temperature.  I called the pediatrician to make an appointment.  They fit him in that afternoon and told us he had a bad case of the flu.  While at that appointment I felt the contractions begin.  So we drove across town to the OB, who determined I had dilated quite a bit more, so he recommended I go to the hospital.

In rush hour traffic my worried husband and my sick little boy, drove me to the hospital where they deposited me on the curb.  I waddled in the hospital by myself and went to stand in the line for submitting insurance information.  After triaging me they said my blood pressure was too high to walk around as I had done in my last labor.  I was told to lie on a gurney in the labor triage as they waited for a room to open up.  After enduring few hours of ever increasing contractions with no relief via movement or distracting company, I was finally transferred to labor and delivery.  I had already made it vey clear during the entire process I wanted natural childbirth.

As I labored without my husband or a friend to advocate for me, I saw something from the corner of my eye.  A nurse was doing something. I whipped my head around and asked, “What are you doing to my line?”  She looked over at me nonchalantly and said, “I am adding pitocin to speed up labor.”  “No, you are not!” I said.  “I had my first son in five hours and I will have this one in less and don’t you dare touch my line.”  She left in huff and I was once again alone in the room.  Everything happened very fast after that.  Fred finally arrived, as my mother-in-law was able to drive up and watch our sick little boy.  Within thirty minutes my water broke and we had Isaac.  His face crinkled in dismay at being born and Fred immediately said he looked like a little old man.  Fred was right.  Looking at Isaac was like looking at miniature version of my father.

They took Isaac to the NICU, but he seemed to be doing pretty well considering he was barely 36 weeks.  Fred looked at me lovingly and said, “I brought you something to read.”  It was Stephen King’s book: Cell.  I loved that book, and I agreed with its premise and thought I would never own a cell phone.

The next day the NICU staff said they wanted to send Isaac home.  He was slightly underweight with an elevated bilirubin.  I was upset.  His brother was a 102 degrees and vomiting.  Our tiny one bedroom was completely contaminated.  I had not even been allowed home yet to clean.  The staff suggested we could always go to a hotel.  I walked away and called the pediatrician’s office.  A couple of hours later the NICU director told me, “I don’t know who your pediatrician is but she just tore me a new one.  Your son may stay for two days.”  I checked out and went home.  I ate some take out, expressed some milk and then began disinfecting the apartment, as my mother-in-law comforted Freddie and my Fred went back to work.

We brought home Isaac to a clean apartment and little Freddie wore a facemask for a few days to prevent infecting his new little brother.  That was our birth story, and though it was fraught with frustration it does not compare to the story depicted on Amy’s Jacket for the Walking Gallery.

Near Miss Mom almost died.  She almost died after delivering nine days before because she almost bled to death in an ER.  She waited for an MRI and bled.  She waited for a pump to express her milk, and found there were no pumps in the ER.   Her friend left her side to go to a local drug store to buy a pump.  Then Near Miss Mom expressed and bled some more.  She bled so much that it welled above her thighs and filled her sheets, twice, while in the ER.  She bled so much it required 11 bags of blood to save her.   And she was awake and realizing all of this until it was almost too late.  And the last thing her eyes saw as she was going into surgery was the surgeon and nurses all lined up and staring at her.

This is the story delivered to me.  I had no pictures of the players, only Amy’s words to guide me.  I began to paint and I focused on the eyes.  Near Miss Mom’s eyes stare at the viewer as she is bleeding to death.  Her face is serene, as though there is so little energy left for the fight. 

The lights above have become bulls-eyes and a dart is imbedded in one of them.  Below the dart, a medical practitioner stands behind a tray of tools.  His eyes are shocked and staring at the gushing blood.  Beside him stands another man, who seems to swallow in disbelief.  Beside him stands the woman, who eyes dart to the side as if laying blame upon the tall man to the right.

To the right the surgeon stands.  His arms are crossed defensively and he stares with uncertainty into space.  And anchoring the red bulls-eyes on the ceiling into the composition, the floor pools with blood.  And this blood is so bright, so present; it almost forms another player in the scene.

I dare you to make sense of this painting if you took the eyes away.  If those little blobs of white and dark were gone would this be the same tale?  The eye is a window to the soul.  I looked within and I saw Near Miss Mom.   And at The Walking Gallery I held her in my arms.  As our eyes filled with tears, I could tell… I had gotten her eyes just right.