Elanor and the ACA (updated)

Update—

Today the Supreme Court chose to uphold the ACA.

Today is a Thursday.  What that usually means is that we have a sitter to give me a break and Ravi comes home late.  Tonight he was home before 10, specifically so we could watch the decision come down.  Ravi and I watched the SCOTUSblog live feed, knots in our stomachs.  When we heard that it was upheld, we cheered (likely scaring our babysitter in the living room).

Please excuse me while I do a happy dance and resist the urge to go wake up my child, so I can hug her and tell her she actually has a future, and she really can be anything she wants to be.  After that I’ll be donating to the re-election campaign (again).

I am reposting this entry because it is important to share WHY this law is important.  Elanor, along with thousands of other people with chronic issues, now no longer needs to live in fear of going 60 days without health insurance, or blowing through her lifetime cap of coverage.

Happy Dance

************* original post below*****

I try to keep the political stuff, particularly the American political stuff to a minimum here on the blog.  I generally feel like there’s a time and a place for it, and that it generally doesn’t jibe with the spirit of what I’m trying to do here.

I would like to one day be able to say that the most important piece of legislation passed in my lifetime was a Marriage Equality Amendment.  It is the Civil Rights issue of my generation, and I am deeply committed to seeing it through.

However.

The most significant piece of legislation that has been or will be passed in my lifetime is Healthcare Reform.  This weeks marks the second anniversary of the Affordable Care Act in the US, aka Healthcare Reform.  People spend a lot of time trying to tear it down, and bitching about its many imperfections, but it is a life altering piece of legislation for our family, and for thousands of families like ours.  Until it happens to you, it is impossible to understand that without insurance everyone is just one health care crisis away from financial ruin, no matter how well-off they might be.

This is not going to be a post that takes on the entire ACA.  Rather, it is the story of how the ACA gave Elanor a future she would never have had otherwise.

Warning–This post is going to be long, and it will contain graphic details and photos.  It may serve as a trigger, particularly if you’ve ever dealt with a child who has a life-threatening illness.  I’m going to strongly encourage some readers (my parents, my inlaws, friends with young babies) to stop reading now, as what Elanor went through is the stuff of nightmares for parents.


Elanor’s Illness

I remember thinking at the time that the most dramatic part of Elanor’s birth story was going to be the pain I felt due to a bad reaction to my epidural (one too many top-ups had caused fluid in my spine, resulting in agonizing pain across my shoulders and into my neck) and how my OB had been yelling at me that I had exactly 3 pushes to get this baby out before she gave me an emergency C-section.

It wasn’t.

Ellie was born with the cord around her neck.  Every movie, every tv show, every story had prepared me to be ready to hear my newborn crying out from the shock of entering the world.  Elanor made no sound at all.  I remember that she looked blue, and that her first apgar was low.  I felt very lucky that a NICU team was in the room (I needed a vacuum assist and it was hospital policy that they be there), and they got her breathing fairly quickly.  However, I was only allowed a brief look and hold (not more than a minute or two) before she was whisked away to the NICU.

Initially we thought that we’d gotten off lucky when she only needed oxygen blown at her face via a tube for 3-4 hours.  We were told that they were going to give her some antibiotics until blood work came back to clarify that she was healthy, and that it was standard procedure in a case like hers.

Antibiotics are given via IV for babies.

The first tests came back contaminated, so they had to be repeated, causing what should have been a two to three day hospital stay to become a four day hospital stay.  During those four days (Monday-Thursday morning) Elanor somehow managed to knock out four IV’s (one or two may have been that the veins blew, a common occurrence in babies this age, but at least two were her doing).  We all laughed and shook our heads in mock exasperation.  Our baby wasn’t going to stand for such nonsense as an IV!

I remember breathing a sigh of relief that the second set of tests showed a healthy baby.  We took her home Thursday and thought that the biggest challenges that lay ahead of us were sleep deprivation and helping her and I figure out how to breastfeed.

On Friday she met her pediatrician for the first time, who noted that she had “mottling” of the skin.  It could be a sign to worry about, she said, but it’s also not an abnormal condition in newborns that could mean absolutely nothing at all.

Looking back with the eye of a more experienced parent, she was so clearly losing ground that weekend.  But we were first time parents, and everyone told us that babies are often quiet on days 5 and 6 of life.  She was so hard to feed…I had to practically force feed her by pushing on the end of the playtex drop-in, and I was stressed about that, but things seemed okay.

Then Elanor stopped eating on Sunday night.  I called the 24 hour nurse line for our pediatrician, and they told me that as long as she was peeing and pooing (she was) that it could wait until morning. She wasn’t running a fever.

We were exceptionally lucky that we were able to get an appointment first thing in the morning.  Our pediatrician, a former ER doctor, didn’t sugarcoat her condition.  Elanor was running a very low temp.  The mottling had spread.  Our baby was very, very sick.  We were told to go straight to the emergency room.  Her exact words were “Don’t stop for red lights.”  At the time we took it to mean “don’t stop and grab some coffee and donuts,” but we later realized that she actually meant “don’t stop for red lights.”

Americans know that hospital waiting rooms usually mean a ridiculous wait time.  We were heading to Mass General Hospital in Boston, a busy urban hospital, which should have meant an even longer wait.

We were triaged immediately, and rushed into a room, where doctors immediately asked me to remove her sleeper and they started trying to IV her.

They couldn’t.

We were moved into “acute emergency”, and our corner of the room was suddenly flooded with doctors, residents, and nurses.  One nurse was assigned to Ravi and I specifically, to try and handle us as the seriousness of what was happening began to really set in.

source

The picture above is what is known as an intraosseous system.  It looks, and sounds, like a woodshop drill.  When a team can’t get an IV via normal methods, they use this to drill a hole into a bone (in Elanor’s case, her left shin) to get fluid into the body that way.  I’m not a doctor so I don’t fully understand why this works.  What I do know is that it has to enter the bone perfectly.  It took them two or three tries to do it properly.  I also know that the sound of this machine entering her body is something I will never be able to forget.  Without looking, my fingers can find the scar that her shin still bears.

Heat lamps were aimed at her body as they tried to get her temperature up.

People swarmed around her, trying to stabilize her to the point where she could be taken up to the PICU.  Ravi and I stood off to the side, both of us sobbing, holding each other.  Yes, we thought she was sick, but this was so far from what we had imagined as a worst case scenario.

This was the first time I realized that my daughter might die.

Ellie was stabilized to the point of being able to be transferred and she was whisked away to the elevators used for patients and doctors.

The nurse whose unfortunate duty it was to deal with us had to take Ravi and I up to the PICU (Pediatric Intensive Care Unit) through the public elevators.  She pushed the empty baby stroller, while we numbly followed her.  I was clutching the sleeper I’d removed in the first room like a lifeline.  In the elevator journey to the 6th floor, a well-meaning woman glanced into the stroller and said “where’s the baby?”  I crumpled against Ravi, moaning.

We were led to a private room and given water.  That day was a blur of waiting, crying, fear, doctors who couldn’t answer the most important question of all “Will our baby live?”, my father in law sitting with us, and pumping.  Pumping was the only thing I could actually DO.  The only time I put the sleeper down was when I needed my hands to pump.

About six or seven hours later, we were led to a private room in the PICU.  Elanor was alive, but they weren’t sure if she would make it through the night.  I’ve read her medical file since and I know that she went into cardiac arrest and stopped breathing.

If we had waited even one to two more hours to get to a doctor, she would have died.

Maybe five people have seen the photo below before today because it is so graphic.  Elanor has never seen this photo, although she will one day when she is ready to hear the full story of her medical history.

I took this picture of Elanor that night because I was terrified that I would never have the chance to take another picture of her again.  Dreams of birthdays and graduations were reduced to one…that she would live through the night.

November 10, 2008.  PICU, Mass General Hospital

The long and short of it is that somehow she had gotten an infection that had turned septic.  Sepsis is when your blood becomes infected.  Infected blood circulating through your body means that all your major organs take a hit.  When Elanor got to MGH, she was in septic shock and early stage organ failure.  At that point in the illness, sepsis is fatal in somewhere between 20 and 50% of all cases.

In Elanor’s case, their priority was to hit her with a ton of broad spectrum antibiotics because they didn’t have time to wait for a blood draw and tests.  As a result we do not know exactly what bacteria it was that infected her, how she got it, or why it almost killed her.  The most likely scenario that the Infectious Diseases team could come up with is that when Elanor dislodged those four IV’s after she was born, they created four perfect entry points for bacteria.

It was, basically, just bad luck.

November 11th and the morning of the 12th were good days.  It seemed that the antibiotics were doing their job and that she was bouncing back with a vengeance.  There was even talk of removing her from the ventilator on the 12th.

Then an ultrasound of her brain turned up bad news.  There were two small bleeds in her brain; she had had a stroke.  For several days she was put on anti-seizure medication as they did more detailed imaging (CT Scan, and then on the 13th an MRI) and tried to figure out how bad things were and whether they were getting worse.

On November 15th, they were able to take her off the ventilator (she’d been kept on it longer in case she were to have another stroke, I believe…I’ve reviewed my carepages updates from those days, and I’m not completely clear whether she needed it for other reasons or if it was discovering the stroke and waiting to see what happened). Apart from about 10 minutes while they changed her bedding on the 13th (when I was allowed to very carefully hold her), it was also the first time that we were able to cuddle Elanor since her admission.

Testing over several days, such as a spinal tap were able to rule out a few potential illnesses (for example, the lack of white blood cells in her spine ruled out spinal meningitis), and she was weaned from five antibiotics to either two or three.  Elanor was put on a feeding tube (a tube inserted in her nose) and my breastmilk was given to her slowly via that tube.

On the evening of November 15th, Elanor’s blood pressure began to go up, and she was put on labetalol, a drug that would be part of a major drug shortage starting in 2011 (story here) and if this is correct, is still not easily available (a fact that scares the hell out of me).  She would remain on this drug until March or April of 2009.  A nephrologist was brought in, as high blood pressure in a baby of her age almost always means that there are kidney issues.  It wouldn’t be until February that imaging would show that one of Elanor’s kidneys had failed permanently-the hypertension was caused by her body trying to keep it alive, basically.

Elanor was moved to a regular pediatric floor on November 22nd.

Nov 22nd, 2008 Mass General Hospital.  Notice the hand going for her feeding tube.

On November 23rd she started drinking milk from a bottle.  She drank expressed breast milk, which they added calories to.  This allowed her to drink less and get the same number of calories, as she was still a bit weak.  On November 25th they removed the feeding tube as she’d been able to drink all her milk from bottles for two days.

On November 27th, which coincidentally was also Thanksgiving that year, Elanor was disconnected from constant IV medication.  It marked the first time I could pick her up and walk more than a few feet from the IV pole with her (which had still allowed us to cuddle her while sitting in a chair or laying on a cot next to her crib in the room). I remember carrying a sleeping Elanor down the hall and describing the paintings on the wall to her, thrilled to have the freedom from the constant IV’s.

Thanksgiving 2008, Mass General Hospital.   You can see the connection points for the IV’s under her leg, but they were only given every x hours, rather than continuously

In a stunning blow of irony, Ravi and I both caught gastroenteritis that week.  Ravi had to stay away from the hospital starting the 25th because he was ill.  I came down with it the evening of Thanksgiving, and ended up in the emergency room of MGH myself.  I was admitted for observation for about twenty hours, and received a number of bags of fluid rehydration (as I was pumping through the whole thing).  This is only relevant because Ellie would likely have been able to go home on either Friday November 28th or Saturday the 29th, but with sick parents, they elected to keep her until the 30th when both of us were healthy again.

November 30th, home again, sharing a moment with her Daddy

However, being released from the hospital was only the start of her journey.

What were her medical needs after the initial illness?

Elanor’s medical care was my full-time job for over a year after that (by which I mean driving her to appointments, attending early intervention sessions, reminding everyone about what medications she could/couldn’t have, and just trying to stay on top of everything).

  • Home Nurse–For several months she had a nurse come to our home to check her blood pressure three times a week, then twice weekly, then once weekly and to weigh her as her dosage had to constantly reflect her blood pressure and be adjusted for weight.
  • Nephrology–Elanor saw her nephrologist regularly, and her kidneys were monitored closely until we were able to determine that one had gone necrotic (failed permanently) and the other seemed to be healthy.
  • Neurology–Elanor had muscle tone issues and there were concerns about how she would do in terms of developmental milestones
  • Pediatric Stroke Team–Elanor was followed closely by a pediatric stroke team to follow the progression of her bleed and to monitor her for issues
  • Gastroenterology and Nutrition–Ellie lost weight while in the hospital and she had trouble gaining after being released.  Eventually we would discover her food sensitivities and put her on prescription formula at about 5.5 months.  She only stopped being followed by them at age 2.
  • Early Intervention–Having a stroke qualified her for EI services automatically.  For her this meant a weekly visit from a nurse who specialized in helping babies and assessing developmental progress
  • Physical Therapist (from EI)–When Elanor began crawling at around 8 months, it started to become clear that she wasn’t using both sides equally, so a PT was brought in to work with her.  After she began walking, her PT noticed that she had motor dysfunction (her right foot basically pointed in and down, and was not moving properly) and referred us to the Orthopedic Surgeon/CP specialist.
  • Orthopedic Surgeon/Cerebal Palsy Specialist–Although Ellie walked at 10.5 months, she had motor dysfunction, her PT noticed that there were issues.  Our Orthopedic specialist was able to asses her early enough that we were able to put her in a brace early on that corrected the problem by age 18 months.
  • Occupational specialist (from EI)–Every few months the occupational therapist would come in and help assess Elanor.

Oh, and of course she had the usual pediatric appointments with her pediatrician for well baby visits and vaccinations.

Elanor ended up needing two pieces of medical “equipment.”

Portland Children’s Museum, Maine, December 2009

Her first piece of medical equipment was a helmet as she learned to walk.  She was at increased risk of a repeat stroke if she were to fall and have head trauma, so she was helmeted from the time she started walking until about 14/15-ish months, when she was determined to be a skilled walker.

Foot Brace, taken January 2010

The second piece of equipment was a foot brace to correct her issues with her right foot.  She wore this from 14 months of age until around 18-24 months of age (with less and less time wearing it daily once she was 18 months).

Where is Ellie today?

Ellie, age 3. Photo taken March 2012 by Kirsten

We are lucky.

Three years later, if you were to meet Elanor, you would never guess at her history.  She is an active, social and bright little girl with a passion for life.

We are lucky.

Ellie still sees her stroke team annually.  There are potential issues down the road, such as learning to read.  Some stroke patients have trouble with their vision when reading left to right (crossing the mid-line), so they’re keeping annual tabs on her for now.  She’ll get another neuropsych work-up at age 6, after which she may be released.  I don’t know at this time.  Her risk of another stroke is low, but not 0%.

We are lucky.

Elanor had her first neuropyschological assessment last September.  While the stroke did cause some white matter damage (white matter controls the muscles and such, so it’s no surprise that she did have some motor issues early on), her grey matter is intact.  She is developmentally where she needs to be with no signs of any sort of development/emotional/behavioral/learning disabilities.

We are lucky.

Elanor has one working kidney.  It is growing at an accelerated rate and she should end up with 60-75% of normal kidney function.  She will not be allowed to play contact sports (and for lower contact sports like basketball, she will need to wear some kind of guard/vest/thing).  Should she ever become pregnant, she will need additional assessments, and may need high risk care, depending on the the toll clearing both her and the baby’s waste takes on her kidney.  At this time, her nephrologist does not think she will ever need a transplant.  She will, however, need annual kidney checks for the rest of her life.

What does any of this have to do with the ACA?

While Ellie was sick, if we had been uninsured, I don’t know that we would have gone to the doctor as quickly as we had.  However, if we had waited to see a doctor because of lack of insurance, even waited two or three hours, Elanor would have died.

We had good health insurance at the time of her illness.  We paid a relatively low co-pay ($250 USD) for her hospital stay.  However, the bill for that stay was 250,000USD, not counting Dr’s fees.  Obviously an insurance company doesn’t pay 250k, but if we had been uninsured, we would have been on the hook for all of it.  Even though we were fairly financially stable, the bills for that stay would have bankrupted us.

When Ravi parted ways with his former employer in November 2009, we are lucky that we were in a place to afford COBRA insurance.  Had we let our insurance lapse, Elanor would never have been able to get coverage again.  While you and I might look at Elanor and see a triumph of medicine and her own stubborn spirit, insurance companies see nothing but a pile of pre-existing conditions that they want no part of–they see a potential transplant or dialysis, stroke, more expensive pregnancies, and a thousand other potential complications.

When Ravi was considering his current job with GNB, insurance was an issue that almost tanked his acceptance.  Had we not been able to get insurance that the US accepted, Elanor would have been considered without insurance for 60+ days and therefore everything would then have been a pre-existing condition.  We could not accept a job, dream job or not, if it did not include access to quality (US accepted) health insurance.  With the passage of the ACA, insurance is one less consideration for potential expats.

Before the ACA, Elanor would have needed a job with insurance within 60 days of graduating college.  Once we could no longer cover her, Elanor could not go more than 60 days post graduation without insurance.  This meant that no matter how talented, she could never think of pursuing a career in the arts (unless she had a day job with insurance) or any other career without immediate insurance.  It meant that her FIRST criteria in picking a major and finding a job would be insurance; not happiness, not location, but insurance. While we love her and would do anything we could to support her dreams, we are not wealthy to the point where we could just pay for her medical care out of pocket for the rest of her life…and a transplant or dialysis would bankrupt us.

Look, insurance companies are scum, and I will be the first person to say that the ACA doesn’t go far enough.  BUT, thanks to the ACA and the fact that my daughter can not be denied insurance for pre-existing conditions, her future is now in her hands.

Now I’m not lying to her when I tell her she can be anything she wants to be. 

Unless…

Unless the ACA is dismantled.  There is a Supreme Court challenge coming up.  The Republican candidates are using dismantling it (among other divisive issues) as part of their platform.

The ACA is modeled on my home state of Massachusetts’ health care reform.  While it is has not been perfect, one thing you can say about it is that post health-care reform in MA, we have the lowest rate of uninsured children (and adults) in the country.

We still have so far to go, but I urge you to contact your elected officials and urge them to support the ACA.  Healthcare is not something that anyone ever goes their entire life without using, and you never know when the unexpected will happen.  The consequences of the unexpected can be devastating.

I edited this entry the day after I wrote it to clarify a few words, and fix some awkward phrasing.  I finished it and published it at 5am originally, so it needed a few fixes.

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