Feburary 12, 2008

St. Louis Children’s Hospital had sent us a beeper at the end of January telling us we would be paged when a heart became available.

Instead I received a call on my cell phone while I was in a mad dash to my annual pap smear.  No joke.  I could tell from the area code that it was St. Louis but I just thought it was another question about insurance or meds or anything except that a heart was available.  We had been on the list just 22 days.

When I answered, I asked the transplant coordinator, Nancy, if I could call her back in an hour.

“Erin, I think you want to take this call.  We potentially have a heart for Henry, can you be at the airport in 90 minutes?”

How could this be happening so fast? I had told myself that this would happen in months, later that summer at the earliest.

My inner dialogue was this:

Holy shit.

Thank God.

Crap, I am not packed!

Thank you, thank you, thank you God!

Don’t pass out.

You’ve not packed one damn thing!

Luckily, I have the dictator gene.  I ran back to my office and told my dear friend Robin what was happening.  Like wildfire, the news spread around the floor and people crammed into my office with disbelief, best wishes and tears.  Then I started barking out orders: “You! Take over my job!  “You! Call my gynecologist and cancel!” “Robin, get me out of here!”  I tried to call Ned several times but he was not picking up his phone.  I shook and cried and beamed.

Truthfully, I had zero plan of action.  For the record, I had a plan for a plan of action.  I was going to make a detailed list of all that I needed to pack and then do so in organized fashion.  I would have childcare ready to go for Ian and Gwyn.  I would be calm. 

Instead, I freaked out.  More than once I had to remind myself to pick up Henry from school because I was in such a panic I thought I might forget.  Robin and I ran to my car to drive me home, get Gwyn and Ian home from school and then pick up Henry at his school and head to the airport.  In 83 minutes.

Time moved impossibly slow but maybe it just felt that way since my heart was racing.   I remember Robin pushing my aging mini-van to NASCAR speeds.  I called my church and a few friends from the car.  I could not get a hold of my dad or Ned and my mother was working in southern Africa.  I called her office in Washington D.C. and pleaded with them to convey the news as calmly as they could.  My mother’s colleague, Lindsey, bless her heart, found my mom, told her we were on our way and then did everything in her power to make sure my mother could communicate with me the entire time she was on a seventeen hour flight back to the US. I called my grandmother and then Tammy to see if she would be interested in moving into my house for the next several weeks and being a foster parent to Gwyn and Ian.  Essentially, I made twenty phone calls in the eleven minutes it took Robin to get me home.  I am confident not one of these phone calls made any sense:

“Hi, it’s me. Um, Henry got a heart and we’re going RIGHT NOW to St. Louis and I don’t know where Ned is and I am not packed but I am totally not freaked out but I gotta go NOW. Bye!” Click.

I rushed home and packed like a schizoid person.  I would arrive in St. Louis with 14 pairs of socks for me, 8 outfits for a boy restricted to hospital pajamas and very little else.  Again, I had a plan going – just thought I’d have a lot more time to put the plan in action.

I called Ian and Gwyn at school and told them to walk home. Then I completely failed to convince them that their mother was calm about this whole transplant thing.  My daughter said, “I’m proud of you” and then, ever so more mature and dignified than me, took her brother next door to the neighbor’s.

We still had to pick up Henry at his school.  Robin insisted I take half a Xanax, which I did – in flagrant disobedience of the directions I had been given by the medical transport pilot to not self-medicate.  I continued to operate at panic attack mode but was now convinced I emitted soothing vibes.  When I picked up Henry, his teacher and the receptionist were out front with him, crying.  I’d like to say I said something reassuring but I find that doubtful.  I snatched Henry from them, tossed him into the car seat and told him a whopper of a lie. 

“We’re going on a jet plane for the most awesome adventure ever!”

That he was totally fired up for.  Once he was on board and the nurse gave him an oxygen mask and took his blood pressure, he knew something was up.  His look said, “You really do suck as a mother.”

Ned had yet to answer the phone. Called his work. Called his cell phone.  Over and over.  It began to dawn on me that we were going to St. Louis without him.

Let’s just say Ned did not show up. That by the time he knew what was going on, when Robin stormed into his office building demanding to see him, Henry and I had already taken off and it was too late for him to catch a commercial flight. When Ned finally got a hold of me on the cab ride to St. Louis Children’s, we knew the truth.  Ned was not going to be there in time to kiss his boy good-bye, hold my trembling hand and meet the surgeon about to replace his boy’s heart.   Divorced or not, I wanted him there.  He wanted the same.

Our plane landed in the middle of an ice storm.  While I was dressed for work in the warmer Oklahoma weather, high heels and a skirt were useless on the tarmac as I trudged through sleet with Henry and all of our belongings to a waiting cab.  I thought an ambulance might transport us to the hospital. Of course, my crazed packing did not involve have any cash on me besides $6.00 so I asked the cabbie to stop at an ATM.  He obliged by dropping me at a truck stop that, I kid you not, doubled as a seedy casino.  When I dashed in, there was a line to the ATM about nine deep with men withdrawing more betting funds.  Ever so shrilly, I loudly announced, “My kid is in that cab in the middle of this god forsaken ice storm and we’re on the way to Children’s Hospital for a heart transplant and I need money NOW!”  Truckers began digging in their pockets and immediately began a collection, setting aside their big win dreams for the screaming lady before them.  No, no I explained.  I just need to use the ATM machine right away.  They let me cut in line and sent me back into the sleet, many of them cheering.

Henry went into surgery at 10 p.m. that night.  Before that, Henry watched cartoons from his bed and I signed endless consent forms, met the wonderful hospital chaplain, Hal, and paced the floor. When they finally came to take Henry, I actually, finally, got calm.  More calm than I had ever been before for Henry’s surgeries.  For me, this was our end game.  Either Henry would come out healed or I’d finally have to admit Henry’s life would be shorter than mine.  I know that sounds calloused.  But I just wanted my child to stop suffering.  I wanted to stop chasing down medical interventions, I wanted my boy to just have some peace.  I wanted peace, also. 

Henry went off in a great mood.  I kissed him good-bye and the nurse took him into surgery in a wagon. He turned around and casually said, “See you later, Mom!”  There was serenity in that moment, we were crossing over.  To what, I did not know. 

Obviously, I was in a state of shock.  I don’t want to give the impression that I was thrilled to be there.  But I was not terrified as I had been so many times before.  I knew it would be a long night and was not happy about facing it alone but I kept telling myself, “It’s just one night for your son to have the life he has long deserved.”

It was this night that I felt God embrace me. Literally holding me so that my fears could not take over.  I did not see God or hear God, I just knew I wasn’t alone.  It remains the most holy ten hour moment of my life.

I sat in an abandoned waiting room.   About 1 a.m., I heard a helicopter landing on the roof.  That’s sad, I thought, somebody has probably been in a horrific wreck in this storm and is on their way to the ER. 

In the next minute I understood that the landing helicopter carried my son’s gift of life.  I bolted out of the waiting room to the hallway that led to Henry’s surgical ward.  Just in time to see the surgeon walk by with the cooler.  He gave me a thumbs up. 

Waiting rooms are the most heinous places on earth.  I sat there through the night, through an ice storm, past dawn.  Alone but not abandoned.  I cried for the donor family, I prayed over and over. I watched a documentary about Mormons of which I remember nothing.  I had my laptop, phone and the pillow and sheets the nurses had sent me off with.  I sent a short email out to Team Henry that read:

I cannot explain that night except to say that my fears never overwhelmed my faith. God was there.  The prayers from hundreds of people across the world snuck into the waiting room and sat with me. Even though we were in the darkest hours of the night, news of Henry’s transplant had spread.  Emails pinged into my computer every half hour or so, sending love through the ether. We were watched over.

Henry bled and bled after they had successfully replaced his heart.  I was told they had to transfuse his entire blood system twice.  And after three hours of doing that (and aging me 100 years), he “spontaneously” stopped.  At 8 a.m., the surgeon came and spoke to me, visibly shaken and exhausted but ultimately confident.  He let me know that Henry’s liver had looked very bad when they went in.  Turns out it was beginning to fail also because of the heart failure. During surgery, they called in the liver doctor who said it would have been only a handful of weeks before Henry would have also needed a new liver.

I wrote this the first week we were in recovery:

I am writing as I am still processing this from a shocked state.  I still haven’t wrapped my brain around what has happened.  Right now I am typing this in the hallway outside the CICU (Cardiac Intensive Care) because they have gone to temporary lockdown because someone’s baby is dying.  And last week, our donor child died.  I know nothing about them yet.  Except that on Valentine’s Day, Henry’s first full day of a healthy heart, a family was preparing to bury their child.  Heather calls me (Brady’s mother) to check in, so delighted for Henry in the midst of her grief. And I’ll find myself crying but I can’t tell you why. The measure between joy and sorrow unclear. 

They let me see Henry about an hour after they moved him into the CICU.  As I am wont to do given my experience, I checked his monitors first.  “Well, that’s not right,” I insisted to the nurse, “his oxygen rates show 96%.  Henry normally runs at 74% or so.” Bless this nurse.  She moved me closer to the bed and said the monitors were not wrong, that was Henry’s new heart beating.  “Look at him,” she said.

Henry’s lips were red, his fingers and toes pink.  His entire skin tone was absent of that cyanotic cast.  His swollen abdomen was completely gone.  He looked, amidst the ventilator and drain tubes and massive chest bandaging, absolutely perfect.  I was stunned.  I had been delivered a new child and yet my sweet, red-headed boy remained.

I gently laid my hand on his new heart to feel the grace of another beating in him.

Within hours, Henry’s liver function test came back completely normal.

Within two days, he was off the ventilator.  His voice was still raspy, but the first thing he croaked to me was “cheeseburger.”  If miracles whisper, that is what ours sounded like.

Transplant Recovery: February and March 2008

Henry recovered from his transplant unlike any surgeries before.  We were off the ventilator the day after surgery, Valentine’s Day.  I was there when they performed the ECHO, hearing for the first time in my son’s life the normal thump-thump a heart should make.  Every hour Henry improved and each hour I thought of our donor family.  I could not get over the fact that our tremendous joy, our salvation, was grafted to their sorrow.

I struggled and was overjoyed for several days and the hospital chaplain, the divine Reverend Hal, visited often.  In the hours before Henry’s transplant, he gave him a tiny stuffed frog and said to me, “Frog stands for ‘Fully Rely on God’.”  I nearly wrenched that poor frog headless the night of the transplant.  Hal remains one of the most important people in Henry’s transplant story because he was steadfast and shared prayer and insight.  When I told him I was struggling with knowing Henry’s life depended on the death of another child, he left me this beautiful note:

“You were not waiting for someone to die. You were waiting for someone who loves someone who dies to make a purely charitable choice at one of life’s hardest moments.  Henry’s need actually created an opportunity for that family to redeem their loss.  Their gift to him is a second chance, his gift to them is meaning and legacy.”

From that moment on, I thought differently of our donor family.  I still mourned for strangers but now I was also so proud of them.  They extended gifts of life to Henry and many more when their child died.  I was in awe of their compassion.  They became heroic.

It would be several weeks later when we found out a little bit more about Henry’s donor.  He was a three year-old boy but that is all we know.  I don’t know how he died, where he lived, his name, what he looked like.  But I do know the purpose of his life was not to save my son.  He was also one of God’s cherished children and then something horrible happened.  Every day since Henry’s transplant, I am reminded of the saying, “God is not in the tragedy, but the aftermath.”

Three days after transplant, Henry was taking his first few steps around the ward.  Within a week, Henry was playing, eating well and making outlandish demands of the grandparents, aunts and friends who had come to see him. 

Each morning, I’d catch the first shuttle from the Ronald McDonald House to the hospital trying to prepare myself that today might not be as hopeful as yesterday had been.  That is all I had known as Henry’s mother, cautious steps forward followed by setbacks.  But, once again, Henry proved me wrong.  In the end, our only serious complication was that Henry’s diaphragm had been partially paralyzed during the surgery which meant one of his lungs was not completed inflated.  Save for that, we would have gone home in three weeks.

But, in a way, I was in no rush to go home.  I had made friends with Tena and Luciana, both from Oklahoma City and both waiting for heart transplants for Lexi and Jael, respectively.   I also didn’t want to take Henry home until I felt confident caring for him.  I was stunned to hear that the doctors expected Henry to return to school the week after coming home.  I just assumed I’d cram his body back into the baby sling and lug him about until he turned 18 (or escaped).  I missed Gwyn and Ian terribly although they had a gaggle of step-in mommies who took magnificent care of them.  (Ian had actually convinced one of his caretakers that I took him to IHOP every morning before school for a pancake breakfast!) I felt cocooned at St. Louis Children’s.  The nurses and respiratory techs were just the breed I needed: hyper-vigilant, compassionate and willing to share jokes about Henry who spent most days being a ham.

One of our biggest blessings was the members of our church just happened to be in town for a convention, including Father Luke and my dear friend Robert.  Robert is the older brother I never had (but clearly needed) and one of the most loving and generous people I know. I don’t think Henry ever had a surgery when Robert did not show up at some point to visit.  

As grace would have it, Father Luke’s sister, Heather, was a minister in St. Louis and she had already been taking great care of us.  One night we all met at Heather’s house for dinner. The minute I folded myself into Robert’s arms it really hit me that Henry’s new heart was just one of countless blessings God had settled into my life.  I realized that I was always at home if I had part of my church family with me.  That night, Luke, Robert, Margaret, John, Diane, Allen, Heather and her family spoiled the three of us, Ned, my mom and me, with gifts, hugs and a wonderful home cooked meal.  It was Thanksgiving in early spring.

During post-transplant recovery, parents receive a good deal of training on how to care for their child from here forward.  I had to make sure Henry always wore sunscreen because one of his medications made him more susceptible to skin cancer.  Who knew?  No more live vaccinations for him.  I needed to watch the amount of fatty foods he ate (as I read this part in the training manual, I realized Henry was wolfing down General Tso’s chicken).  But the part the transplant educators were most concerned about was the drug regimen.  All transplant kids go home with a long list of meds that must be given with absolute consistency.  No skipping a dose, no giving meds a few hours late.  Hopefully, as in Henry’s case, the kids come off of most of these medicines within a matter of weeks or months.  But they will take the anti-rejection drugs, at least, for the rest of their lives.

Turns out, following the medication schedule was no big deal for me.  We had been giving Henry at least seven medications daily since his birth.  When he arrived for transplant, Henry was on blood thinners, heartbeat regulators, diuretics and a little blue pill also known as Viagra to help his lungs function properly.  The transplant coordinator gave me the “blue card” which listed all of Henry’s new medications, dosages and delivery times.  In comparison to where we had been, it was not alarming.  By the time, we returned to Oklahoma City, we were down to only four meds.

Henry learned to own the CICU (Cardiac Intensive Care Unit).  He’d yell at passing nurses, not even his own, that he sure would like a popsicle.  He’d walk for long stretches and found it completely unacceptable that he was not allowed to leave the ward.  Instead we did “ward laps,” Henry waving to all as if he was Miss America with one of us trailing behind with monitors and the IV tree, tripping over ourselves, begging him to slow down.

I remember there was a baby girl in the CICU who would always wave back to Henry.  Her Amish family, including at least a dozen extended family members, tried to protect their privacy by circling around the glass doors to her room.  But she always found a way to peek through.  More than once I had to stop Henry from shoving through family members in his quest to grace his “fans” with his assumed celebrity status.  One day the family must have received bad news about the little girl.  They gathered into a whispering mass in the family waiting room.  There was a lot of quiet weeping, especially on the part of the young parents.  I got really pissed off because no one else in the waiting room offered them any privacy or even a place to sit.  This family waiting room at St. Louis Children’s CICU actually has two spaces – a dining area and then a large room with recliners and couches.  Not one damn adult got off of a chair or moved their belongings so that this family could have some privacy.  There was a lot of pointing and commenting out loud that, “They must be Amish, look at their clothes.” 

These family waiting rooms are always of questionable value.  Absolutely, families need an area to rest that is close to the intensive care unit.  But some people behave like savages in there.  Seriously, they can’t throw away their half eaten drumsticks or soda cans. They talk on cell phones so loudly that I wonder if the other person is on the International Space Station and watch TV shows like “I screwed your baby daddy and YOUR daddy, too!” For HOURS on end.  I think, in all of the time Henry has been in an ICU somewhere, I have never sat in one of those family rooms for more than an hour.  I become so aggravated by these living conditions that the Martha Stewart side of me, which is never present in the outside world, takes over.  One day, I found myself cleaning one of the family shower rooms with increasing resentment.  I marched out into the resting area, dumping the seven towels other people had left on the floor and asked, ever so snottily, “And who do these belong to?  I see that SEVEN OF YOU are unfamiliar with the notion of a laundry hamper.  It’s the ginormous, damn basket sitting right next to the shower.”  That tirade pretty much killed my chances of making any friends there.   

After a three week stay in the CICU, we were “stepped down” to a general recovery ward which greatly improved Henry’s spirits.  Now he could go for wagon rides around the hospital and Henry visited the play room, cafeteria and skywalk as often as I let him.  Living in a hospital really drives home the point that you can live with a lot less than you think you need.  We had no car and few possessions with us.  I had all that I needed:  a healthy boy, my camera, laptop and of course, sunless tanner.  February in St. Louis is bitterly cold and so I was thankful that I rarely had to go outside, save for my commute to and from the Ronald McDonald House.  I glowed during those weeks – partly from my joy and partly from my artificial tan which I had hours to apply.

The Ronald McDonald House in St. Louis was vastly different from the new, spacious one at Stanford.  The St. Louis House we stayed in (they actually have three facilities) is an old home with several bedrooms but only a few shared bathrooms.  I was assigned to what I affectionately called, “the belfry.”  There was no elevator to our third floor room which made it a nightmare to lug up luggage and a 70 lb oxygen tank once Henry went on outpatient status.  Our room was tucked into the house’s corner and the walls creaked when the wind blew.  The room was dark and decorated in a style that could only be classified as “Victorian Paranormal.”  Most frightening was the ancient radiator which I had to turn on each night.  It would hiss, rattle and moan and I would wave my rosary over it in hopes of ridding it of its’ gaseous demons.

Ronald McDonald Houses are a godsend.  We paid five dollars a day to stay there which included breakfast and wonderful dinners made by community volunteers.  There are laundry facilities, internet stations and family and play rooms.  Considering that the alternative was to stay in a hotel at $100 a night plus pay for all meals, we could not be more grateful for this charitable organization.  Just like at Stanford, this Ronald McDonald House was filled with families facing unimaginable health crises.  Luciana and her grandmother were at the house and Tena stayed in the long-term apartments next door. 

Ronald McDonald Houses maintain “family chores” so that everyone participates in their upkeep – doing dishes, sweeping floors, wiping down counters and so forth.  My assigned chore was to take out the trash after dinner.  This involved me hauling several trash bags out across the frozen parking lot and then depositing them into a dumpster that was in a locked metal cage (apparently, St. Louis trash is of such value that it must be protected from theft). Invariably, I could not get the padlock to open and then cursed that I had decided to take on this task with flip flops on.  But it taught me humility.  Every day, there were people there ensuring I had a place to rest, a meal to eat, some version of peace and quiet.  The least I could do was take out some trash.

As I sloshed my way through the ice and back to the porch one night, I stopped to talk to a mother and grandmother taking a smoke break.  In their family, twin boys had been born and one had already died.  The remaining brother needed heart surgery.  In the midst of all this, the great grandmother had died and Mom and Grandma did not have the gas money to travel home for the funeral.  I, on the other hand, had so many friends back home taking charge of our Team Henry fundraising efforts.  A Team Henry Chili Cook-Off was in the works.  Twenty-six people from my church had signed up for to compete for best chili and more than 150 people were expected to attend.  All proceeds would go to Henry’s medical bills.  Once again, I was reminded that having a very sick kid is not nearly as crappy as having a sick kid and being dirt poor.  I figured I was tending to my own karma when I slipped some cash under the door of their room the next morning.

One night, I opened the nightstand drawer in my room and found a journal there.  Respecting privacy, I waited almost ten seconds before deciding to read it.  Families who had stayed in the room before me had written it.  They wanted to share how grateful they were to the Ronald McDonald House. 

I will never forget one story.  A young couple had just bought their first house and could not have been prouder that they were providing a new home for their beautiful three year-old daughter.  On their first night sleeping there, there was an explosion in the home from a gas leak.  While the parents escaped with few injuries, their daughter was horribly burned.  Over the next year, she kept returning to St. Louis Children’s for extensive medical treatment.  While she had third degree burns over large portions of her body, the worst injury was the damage to her lungs.  After a year of coming back and forth to the hospital, she died.

I knew that meant that, not too long ago, her mother and father returned to this room, packed up and headed home without what they cherished most.  I realized that I had been living nearly seven years amidst such stories.  Henry’s friends dying, our neighbors in the PICU, I was too close to all of this.  I was sick of seeing sick kids – kids with surgical masks and chemo ports, bloated faces, blue lips, bald heads, weak, conciliatory smiles. I also began to feel guilty my child was starting to thrive. 

In the end, Henry did have to return to surgery to have his diaphragm repaired.  His lung got its’ act together and fully inflated and we officially became slated for discharge. The transplant team asked us to stay one more week at the Ronald McDonald House so they could do one last heart cath/biopsy.  Heart transplant kids have to have small sections of heart tissue biopsied to check for rejection and other issues.  These procedures happen weekly, then bi-monthly, then every month, then every six months until they space out to every year or two.

When we were told we would be heading home, I made a very difficult choice.  I decided that I would go home early and Ned would return to St. Louis and stay with Henry his last week.  I did this for two reasons.  First, I wanted Gwyn and Ian to know I was coming home to them because I simply couldn’t stand not seeing them anymore.  For years, their needs had come second to Henry’s.  I wanted the three of us to have time together before their brother came home, partly because I knew Henry would be lavished with attention from family and friends.  Secondly, I felt I owed this to Ned.  Ned could have chosen to be an ass about our divorce during these difficult months.  But he knew what was more important and was an incredible father and friend.  So often, when Henry was hospitalized, I dictated everyone’s schedule, especially when long distance travel was involved.  Ned let me decide when it was best for both of us or just me to be there.  Although I selfishly wanted to be the one to triumphantly bring our son home, I felt Ned deserved that moment.  He had been equally strong, equally sacrificing.

On a beautiful day in mid-March, I went to the Oklahoma City airport to pick the two of them up, at least an hour early.  Airport security kept chiding me from crossing their imaginary security line because I was so anxious to have Henry back in my arms.

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