Home & Hospital, 2002-2006

With Henry home, we also gained a lot of medical equipment including the “monster” – a stationary oxygen machine that was nearly the same size as Henry’s crib and emitted sounds similar to an industrial grade generator.   But, between administering eight medicines daily and stomach tube feedings (aka g-tube), we did find a normal “new kid” routine.  Henry napped with his brother on the couch, hid out in the baby sling for runs to the grocery store and endured his big sister fretting over his unruly, burgundy hair.

It took a while for the weeks of sedation Henry had to fully leave his system.  For the two months he was in the hospital, he spent most of those days in a drug-induced coma.  But once it wore off, Henry became very alert.  He would look around so comically, less than impressed by the lot of us.  Henry had this way of looking at you that somehow sweetly said, “Don’t screw with me.”

We avoided some of the less pleasant aspects of having a newborn.  Henry often slept through the night because that is when we ran the big g-tube feeding that pumped his belly full. Although when he woke, there was often colossal poop.  He never had colic and save for the fact that he had a really awful heart, this kid was healthy.  He rarely had a cold and just a few ear infections.

Henry was developmentally delayed.  And he never crawled, which is considered an important milestone.  But, given everything else we had to worry about, I let that one go.  It just seemed that he lacked the muscle development to manage it.  Instead Henry scooted on his butt for miles, leaving shredded diapers in his wake.

By the end of summer, we got to say goodbye to the monster and Henry fed himself entirely orally.  He was a easy going kid, much like Gwyn.  In the fall of that same year (2002), we returned for the second of the Hypoplastic surgeries (the Norwood comes first , followed by the Glenn and Fontan. Sounds like a cheesy boy band).  I dreaded taking him back there.  At that time, I wrote:

Three weeks back in the ICU.  Henry bombs extubation again and again.  I find myself bonding with nurses and residents and avoiding friends. 

Here are the things I didn’t know, didn’t care to know.  A fungus can grow in your heart and it is almost always fatal.  Post-operative staph infections can set in so fiercely that the burn unit has to be called in to tend to your child’s wounds.  PICU nurses are stern and compassionate.  They aren’t angels but they are merciful. Your child can have massive heart defects, a blood clotting disorder and there will never be an explanation for why.  Some children die alone, some die in unbearable pain and some children walk out of the PICU with smiles and stickers and are never seen there again.

Henry’s surgery went well but he had the same complications – getting off the ventilator and staph infections.  I became a Nazi about people washing their hands when they came in Henry’s room because he was so damn talented at picking up infections.    In the end, we stayed only three weeks that time but, post-surgery, his O2 saturation rates improved only slightly.  The doctors began warning us that Henry’s valves were weakening.  I could not worry about that – I was still obsessed with compensating for the missing ventricle.

I also worried about other things.  Like I needed to stay in school and work as a graduate assistant.  I refused to give up on my PhD for two reasons.  First, I knew I needed the earning power the degree could bring to the family (and, let me tell you, we are so filthy rich now that I can often buy groceries and pay the electric bill in the same week).  But, I also refused to quit.  There was a part of me that was in denial that things were so crappy.  I so badly didn’t want to wallow that I did everything I could to keep up the family status quo – three kids, two working parents with just the minor detail that one kid kept needing heart surgery.

Of course, the bottom fell out of this plan.  Ned was laid off from his store director position after giving them years of service and opening several branches.  He was never given an exact reason why he was being let go but I felt certain that when the company saw Henry’s medical bills coming in (I think his first hospital stay cost insurance $240k), they reconsidered how valuable of an employee Ned was.  Am I bitter?  You bet.

Ned was not a stellar stay-at-home dad.  Of course, I had never been great on that front, either.  But so much of Ned’s identity, like a lot of men, was tied up in being a provider.  It took him several months to find a new job and when he did, the work hours were even worse.  I began to realize Ned and I were often at odds with one another.  We got along great as friends but living together was a whole other dynamic.  My marriage was derailing and I didn’t have the energy or, sadly, the interest to do much to stop it.

One bright spot in that first year was supposed to be Henry’s birthday.  We planned a blow-out bash at our house and invited dozens of friends.  Then, that morning, I woke up with vertigo, which I had never had.  Vertigo is like the world’s worst hangover, coated in nausea.  I couldn’t function and eventually had to go to the ER.  Ned and our mothers pulled off the party without me there for most of it (as I refused, while dry heaving, to cancel the party).  Henry appropriately smeared birthday cake over his slightly blue face and the other kids massacred some piñatas.  Once I arrived, I sat on the porch, clenching a lawn chair, with my head between my knees.

I try to write my children letters for each of their birthdays.  Let’s do the math.  I have three kids who are twelve, ten and seven.  I have written eight birthday letters, total.  Yes, I suck that much.  Henry’s first birthday card was a postcard with a baby gorilla on it. I wrote:

Happy 1st birthday beloved Henry!

This postcard reminds me of you when you were first born – lots and lots of black hair.  Thank God, I thought, one that finally looks like me! Of course, your dad’s genes have taken over and now you are a flaming red head.  I adore you – you are the best thing that ever happened to me.  I grew up tenfold in the first year of your life. You have been through hell and come further than any of us expected.  You are the riches I never imagined in my future, the perfect gift I hardly feel deserving of. 

I love you, Mom.

We had Henry at home for two, rather uneventful years, knowing that before his fourth birthday he would have the third of his staged surgeries. I enrolled him in a preschool for children with developmental delays, took a new job, tried to finish up my PhD coursework.  When it came time for the next surgery, we were hopeful.  All we had to do, we told ourselves, was get through this last slated surgery and we would pretty much be home free.  Because this was the choice we had made.  When Henry was just days old, Dr. Ward took us aside and said we could go the surgical route or put Henry on the transplant list then.  We wanted them to work on the heart Henry had come to us with. Plus, we questioned whether they could find a heart that small and we would have to choose which city to go for the transplant.

This was my mistake.  There is no doubt I should have sought a second opinion and asked more questions.  Except that I wasn’t really functioning then.  Dr. Ward was offering us two alternatives but I could only focus on one.  My mind was made up that we would commit to the surgeries.  Heart transplants were heroic measures for basically terminal children.  I couldn’t think of Henry that way.  In my heart, I knew he was dying but my brain refused to rationalize that.

Henry did not do well with this surgery (2005). They had trouble getting him off bypass during surgery and his leaky AV valve looked worse.  Once he was back in the PICU, I was him for just a while before I was rushed out of the room.  Henry began bleeding out, presumably from an elevated level of blood thinners, and the surgeon had to reopen him right there.  Ned had left briefly to pick up Ian and Gwyn.  For what seemed like an eternity, I stood down the hallway where I could see the doctors and nurses working on Henry but no one would tell me what was going on or, more importantly, what was going to happen.  A church friend, Robert, happened to be there with me.  I was pacing and crying and shaking and after a while, he just had to leave.  It was too much for him to witness and part of me wanted to go with him.  For me, this was the scariest moment.  When Henry stabilized, I returned to his room and had this inner monologue with him where I literally threatened his life if he ever did that again.  At the time, it made sense.  I was livid at his heart or this one freakin’ valve for not giving my kid a break.  There were many times when I understood Henry might die but that night I believed he would.

But things, as they always did, turned around. This time Henry took only two attempts to extubate and we were home again within three weeks.  He seemed to grow faster and by this time I had enrolled him in a special education program at his siblings’ elementary school.  None of the children were like Henry – profound autism, that one wheelchair-bound, another nearly blind.  Henry’s issue was that he was very small, had a lot of learning to catch up on and was very defiant.  We started calling him Henry the 8th because the boy could be tyrannical.  He had the most amazing teacher and aides but Henry cared about only two school-related events: going to the cafeteria and riding the bus.

Living between the PICU and real world became normal for us.  We had three children.  Gwyn was an ace student and soccer player. Ian was uber-affectionate but really had no desire to learn reading since he wanted to be a thief or a Chinese cook when he grew up.  Then there was Henry, the family insurgent, seeker of mayhem, the child who, sooner or later, would wind up back in the hospital.

You had to look closely at Henry and know his story to be able to detect he was ill.  Although he was five years old, he looked like a toddler.  His lips, nose and fingers always had a blue tint to them – the result of his low oxygen rates.  And he had a big belly.  For a long time, none of us were sure if that was related to the heart or his binge eating.  Basically, my child looked like a slightly blue, pudgy elf. With spiky red hair.

We got to go a year without surgery until they called Henry in for another heart catheterization. A heart cath is routinely done on CHD kids. A thin, flexible tube, fitted with a camera, is inserted through the child’s groin and up a blood vessel to their heart.   The doctors planned to do some diagnostic pressure readings on Henry, look at his heart and coil some collateral blood vessels.  Guess what?  When your circulatory system does not work the way it should, your body has the ability to grow small, “collateral” blood vessels to compensate.  Problem was that the surgeons did not want Henry’s body to override all the hard work they had done and so those vessels have to be coiled – essentially cut off.

A heart cath is no big deal given everything else we had all been through.  That morning Henry ran amuck up in the cath lab, rifled through the nurses’ filing cabinets and set off an alarm.  The nurses and I agreed we could not get this kid sedated soon enough.

We expected good news.  Neither Ned nor myself believed Henry had gotten any worse.  The blessing of folly, faith or somewhere in between.  When Dr. Overholt came out, he cautioned us.  The repairs they had done so far were only temporary measures.  The surgical interventions were not holding up well and that damn aortic valve kept weakening.  Sooner or later, this heart could not endure a growing boy. 

Ned and I didn’t know what that meant.  Henry’s case would have to go back to cardiology conference, a new plan of action needed to be established.  In the meantime, we should go home and wait to hear from them. 

We took Henry home and he didn’t seem to deteriorate at all.  He did run away a lot until I installed a $700 steel front door.  He liked to go out front with his pink toy vacuum and Elmo slippers and obsessively clean the driveway.  He jammed action figures in the ice dispenser and toilet.  He despised Sunday school, adored his sister, ate cereal by the fistfuls.  He seemed like an average two year-old except that he was nearing five.  Still just 30 pounds, taking eight meds a day and with this bloated belly that did not have an exact diagnosis. Maybe it was protein losing enteropathy where fluid is retained in the abdomen due to heart failure. Or, the doctors, conceded, maybe his liver was starting to go bad because of the heart failure.  All I heard was heart failure.  I didn’t give a damn why.

Choosing a Second Heart, Stanford, 2007

By 2007, it was apparent that Henry’s AV valve was failing fast which, in turn, compromised all the other surgical repairs. We knew what our options were:  find another hospital that would attempt the valve repair, heart transplant or let Henry live as long as he could without further surgeries.  To be very clear, we fully considered that last choice.

For a few months, Ned and I discussed what we thought we should do.  In many ways, that was all we had left to talk about. In the midst of all of this, I knew my marriage had ended.

I struggled a great deal with the idea of a heart transplant.  Like all families who receive gifts of life, I wondered who I was to wish another child dies so that mine had a chance to survive.  People would say, “Well, that child’s going to die anyway.”  That was little help because it still seemed as if I was poaching on another family’s heartache.

I made myself imagine letting Henry have the life he could with the heart he was given.  I knew I would have to watch him die.  I told my closest family and friends that we were considering not going on the heart transplant list and what that eventually meant.  To their credit, not one of them tried to talk me out of this choice.  They were scared and heartbroken, I’m sure, but they had the grace to recognize that Henry had already been through so much.

What I did not tell anyone was that I began planning Henry’s funeral.  I had to do this, not to be morbid but as a coping strategy – it allowed me to acknowledge we were living on borrowed time.  It gave me permission to name what the worst possible situation could be and then prepare for it.  I bought a book of children’s eulogies (This Incomplete One) and selected a few songs that I felt spoke to my son’s vibrant life.  It was a quiet summer.  Gwyn and Ian were busy with summer camps and Henry stayed in a preschool program.  I had finished my dissertation and taken a few months off before beginning a job search.

Mourning crept into me.  I began to understand my son did not just have a horrible defect. His heart was dying.  Henry always had an odd mix of symptoms.  Yes, he only had about 75% of the oxygen he needed and his fingers, toes, lips and nose were always blue.  His belly was terribly distended, filled with fluid.  When your heart does not function properly, excess fluid is created around the heart and then dumped into the abdomen.  Henry took three diuretics daily but we could never get rid of his big belly.

But the medical evidence of Henry’s heart struggles never matched the way my kid lived life.  Henry’s appetite was more like one of a sixteen year-old boy than one with a chronic illness.  As for his energy levels, all I can say is that he was hard enough to control even with his malfunctioning heart.  Henry could not run much, ride a tricycle or jump (he had a 1.5 inch vertical on the basketball court) but he still had plenty of juice.  He rarely napped and could spend hours playing with classmates and his siblings.  We had taken him on trips overseas and to remote high altitude settings, the kid always did fine.  Certainly, my boy had the energy to constantly wind up in trouble – dismantling curtain rods, wrapping himself in aluminum foil, using my curling iron as weaponry.

At the end of summer, my determination finally beat the crap out of my fear. After being told by the Oklahoma City doctors that Henry was running out of options, after imagining his funeral, I set aside my grieving and guilt. I was not going to let this child die.

Intellectually, I knew Henry might die anyway.  But I’d be damned if I was going to sit by helplessly.  I turned on the researcher in me.  Who, where, what was going to fix my child?

God stepped in to answer this for me.

Unbeknownst to me, an old high school friend, Wendy, had a former brother-in-law, Dr. Andrew Maxwell, who was a pediatric cardiologist at Stanford University’s Lucile Packard Children’s Hospital. She called him and asked if he would look at Henry’s surgical notes.  Then she called me, delivering a miracle. Dr. Maxwell graciously took the case to Stanford where dozens of doctors -- cardiologists, cardio-thoracic surgeons, the transplant team, intensivists and anesthesiologists – reviewed it.  Within a matter of weeks, the hospital called with a guarded plan of action – they were moderately confident they could repair the AV valve.  Dr. Hanley, a world renowned pediatric cardio-thoracic surgeon, agreed to attempt the surgery.

We arrived at Stanford, just Henry and me, in early December.  Ned was to arrive the day before the actual surgery.  Except that, on that day, the doctors had to cancel because another child was so gravely ill and she needed to take Henry’s slot.  His surgery was postponed for the following week.  The cardiology team then suggested a routine cath for Henry after the weekend before doing his actual surgery – just to get a “fresh idea” of what was going on in there.

So instead of having open heart surgery, the three of us had an unexpected weekend pass in this amazing locale and we took Henry to San Francisco on the train.  The kid ate his way through Fisherman’s Wharf and Chinatown.  He rode the carousel and I bought salt water taffy for Gwyn and Ian.  Ned and I bought nice Christmas gifts for one another, even though our marriage had ended.  It was one of many times that I realized, divorced or not, Ned was an outstanding father and very good friend.

Monday morning we checked in and met the most dismal cath doctor.  I could not have cared less that he was not going to win any congeniality awards, I’ve longed learned skill matters more than charm on this front.  But our anesthesiologist did one of the kindest things we’ve ever witnessed at a children’s hospital. She gave Henry an oral sedative and then let me carry him straight into the operating room and hold the gas mask to his face until he fell asleep.   I can honestly say I fell in love with her at that moment.

Henry had the cath and the doctor came out somehow even more dour than when we had last seen him.  Very bad results.  Henry’s pressures were way too high, just a few points off from generating other organs’ failures.  It was a blessing that his surgery had been cancelled, the doctor did not know if he would have survived it.

What?  How did things get so damn bad since the last cath?  Why hadn’t another cath been done in between? And what in the hell were we going to do now?  Oh, and by the way, right after I left Henry knocked out in the OR, he had a “cardiac event” that required them to use the paddles.  “Cardiac event”…sounds like a gala with an unfortunate interruption.

At this point, we had yet to meet Dr. Hanley -- the surgeon who had offered to operate on the valve.  Albeit he was overwhelmed with other children’s cases, I was, nonetheless, not leaving the state of California until he looked me in the eye and gave me some options.  It would take three days for him to see us.  In that time, we took Henry to San Francisco again, the local Episcopal Church came with a beautiful quilt for Henry to take home, our adorable social worker whisked Henry away for play, story and music time.  And I marveled at Lucile Packard Children’s Hospital – they had a school for patients and siblings, an amazing parent’s library, and it seemed as if 50 people were involved in Henry’s case.

We stayed at the Palo Alto Ronald McDonald House (a gorgeous establishment) and ate a lot of Chinese food, tangerines and pastries from the nearby, hoity-toity shopping district.  Ned bought Henry a rockin’ pair of Vans with black and white checks.

We had gotten to know a few other families at the Ronald Mc Donald House and everyone’s story sucked.  Cancer of every sort, lots of heart defects, crashed immune systems, rebuilding spinal columns.  One little girl had lost all of her eyebrows because of chemo.  One night during art time, she simply painted them back in with turquoise paint.  Then she and Henry took turns shoving mini-marshmallows up each other’s noses.

Early one morning, I was making Henry’s breakfast when a mom came out with her luggage.  Another mother rushed over to her and gushed, “Oh good, you guys get to go home!”

“Yes,” replied the mother with her suitcases, “she died last night.”

My stomach dropped. I scooped up Henry with his cereal, dashed past her with a pathetic smile of condolence and ran back to my room.  I didn’t want that to be me. Ever.

Doctors tried to introduce the option of a transplant to us slowly over the week.  One morning it was announced that we should take this opportunity to meet with a transplant specialist, Dr. Chin.  I wanted to hear what he had to say.  But I was also determined to meet with Dr. Hanley.  Funny how I placed all my confidence in a man I had never met. We had waited days for Dr. Hanley to have time for us.  We would have to wait another day.

Dr. Chin was a compassionate man who had the unenviable job of telling me Henry’s heart “was incompatible with life.”  As if this was an e-Harmony survey.  After explaining to us how horrible Henry’s heart valves were and how these were now potentially compromising his kidneys, lungs and liver, Ned totally got on the transplant bandwagon.  He wanted to know how long we could expect to wait, how long his recovery would be, how long he would have to live with a new heart.

Then came the drawing.  I cannot tell you how many cardiologists are frustrated Rembrandts.  They whip out their scrip pad with furrowed brow hoping they can somehow make you understand, through the gift of their art, why things suck so incredibly badly.  Ned shone here.  Sure the SVC would flow right into (or out) of that valve (I sure as hell don’t know).  Absolutely those collateral vessels are troublesome. Except that when I saw the diagram, it looked like a reindeer.

This was all very educational but part of me refused to believe they were talking about my child.  Henry was going to be saved through a miraculous AV valve repair just as soon as we met with the Dr. Hanley.  As Ned hung onto every word Dr. Chin said, I contemplated how I could storm Hanley’s office, taking his assistant hostage until he agreed to find time for me.  Perhaps, that was unfair.  Dr. Hanley wasn’t avoiding me.  He was spending hours upon hours in surgery saving other children’s lives.  But, damnit, I was ready for him to take on my kid.

However, I did pay more attention when Dr. Chin diplomatically suggested that we not get Henry’s transplant at this renowned hospital.  Why?  Because in California there are at least four hospitals vying for pediatric hearts.  Another hypoplastic boy, Henry’s age, had been waiting a year at this very hospital.  The implication was that Henry did not have that long to wait.  Chin urged us to get listed as soon as possible.  This soundly distinctly more complicated that noticing we were running low on milk and running out to get some.

“Go to St. Louis”, he told us. It was closer to our home, had less “organ competition” with other hospitals and was equally respected for their successful heart transplants.  More importantly (and morbidly) St. Louis got more hearts because children died at higher frequencies in that part of the country.  Why, I wanted to know.  He mused, “Less seatbelt usage, house fires and such.”  I decided I didn’t want to know what “and such” meant.

The next day, Dr. Hanley, whom I had pinned all my hopes and sanity on, had an hour to meet with us. Right off, he didn’t mince words.  If they had attempted the valve repair, given what they found from that week’s cath, Henry would have had a 50% chance of making it through the surgery.  If he had survived, his chances remained at 50% for living past a few years.

My lungs emptied of all air and the room was quiet save for Henry who was crawling underneath Hanley’s desk.  The doctor said he would still attempt the repair but that we had to know the odds we were facing.  I asked him, “If this was your child, would you risk the surgery?”

“No.”

He estimated Henry had about a year to live before his heart failure began to rapidly steal his life.  I asked how Henry would die.  It would begin with a decrease in energy, increased fluid retention, trouble breathing and eventually his heart would just stop beating.  It sounded so gradual and yet I knew it would be an exhausting, painful way to go.

We chose not risk the AV valve surgery and left California the next day.  A little more heartbroken, trying to find the faith to sustain us for this new turn in Henry’s road.  We got home just before Christmas and a phone message was waiting for me.  Dr. Chin, the professional I had attempted to dismiss, had already called St. Louis and arranged a preliminary evaluation for Henry.  I set about wrapping the kid’s Christmas presents and breaking the news to family.

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