When the music stops (2/2)…

In this journey, we have had many great people supporting us.  When things were at their worst, we had many who sent us care packages, made meals, sent encouraging notes, and prayed fervently for our family.

However, when the days turn to weeks, and the weeks turn to months, it is inevitable that the support wains.  In truth, having the constant attention subside was a welcome change.  The support we received came with many mixed emotions.  It is uncomfortable to be the center of attention.

We don’t want to be “special” anymore.  All we really wanted was to be normal again. 

The truth is, we are not a conventional family anymore.  By outward appearances, our family must seem idyllic.  A mom, a dad, a daughter and a son.  Nothing overt that would indicate there was anything wrong.  As we all know, outward appearances can be so deceiving.  Our reality is that we are a family with two chronic cardiac conditions and many complications from the heroic efforts made to save their lives.

To this day, I still get questions about my son’s heart transplant.   Questions like; “how long will he be on anti-rejection medications?”  My response invariably is “as long as he is using his donor heart.”  In my wife’s case most people try to equate her situation to something they are familiar with; a heart attack or blocked coronary arteries.  To be honest congenital heart disease is something we know very little about.  The issues we deal with are a result of genetics; the structure of the heart muscle itself and it can’t be fixed.

There is no cure. It will likely only get worse. 

It would be easy to be bitter or angry.  Some would say it is not fair.  However, through our journey we have been shown so many amazing families who have journeyed with us.  Some of their stories have tragic endings.  A vivid reminder of how close we came to our own catastrophe.

Our experiences have been brutal and in many ways seemed more than we could bear.  Many times I look through pictures and re-read things I’ve written and I think to myself “did this really happen?”

Thankfully our family is still together.  Today we are OK.  Our life is complicated and will always have the constant reminders of our medical complexity.  However, we have so much to be thankful for and we WILL enjoy every day together because our future is uncertain.  We’ve been given a gift and we will do everything in our power to enjoy every moment.  We ARE better together.

 

Follow Donald at http://donaldlepp.blogspot.ca

A Little bit of serendipity

She was the daughter of a childhood friend who I hadn’t seen in twenty years.  She bounded into my office, full of energy, laughing as she excitedly told me about her day.  As a 10 year old, she loved the fact that her doctor was mommy’s friend from when SHE was ten.

“What’s up guys?” I asked her mom and my 10 year old charge.

“Oh, I just wanted to check in with you about something.  I’m sure it’s nothing but just thought I’d double check.  Lisa has been having some nose bleeds that take a while to stop and today she seemed to have trouble swimming –she got tired quickly and said she couldn’t really breathe. I’m sure it’s just a cold”

“I feel fine!” protested Lisa, as her mom told me the story

“Sure you are, and stop putting things up your nose!” I said teasingly, as I helped her up on the table.

Of course she just had a cold, or at worst was a little anemic. I knew this kid didn’t exactly have the greatest diet. I asked about other bleeding including from her gums (yes-she doesn’t floss!) and whether she had started her period (NO!).  I quickly did my physical exam, looking for enlarged glands, open sores in her nose, and listened to her chest,  while chatting with her mom about her current pregnancy.

Out of the corner of my eye, just as Lisa was about to hop off the table, I saw them.

Petechiae.

Just a few scattered on her chest.  I lifted up her pant legs and pushed up the sleeves of her arms and there they were-bright red pinpoint spots.  And on her thigh- a large purple bruise.  A few more when I looked at her back.

“Where’s that from?”

“Oh you know Lisa, always bumping into things”, her mom shrugged.

“Well most likely she’s fighting off an infection and it’s viral given what I’m seeing and hearing” but I would like to do some blood tests.

“Mom, no!!!” Lisa whined as her mom took the requisition from me.

Her mom glanced at me with a raised eyebrow, knowing I wouldn’t make her get a needle if I wasn’t a bit worried.

“I’m sure it’s fine, but Lisa, I do need you to do this” I said. Promises of visits to the toy store were made and the tears soon stopped.

I forgot about the blood test as the week went on. Until Friday. And I saw it.

Leukemia

---

That was 8 years ago and I’ve left that practice and moved provinces. I’ve lost touch with my friend and her daughter but I know through mutual friends that Lisa is doing fine.

I’ve frequently thought about that visit and wondered, what possessed me to order blood tests that day instead of waiting and bringing them back to see if the symptoms resolved?  That’s what I had always done before and normally would do. It would be the standard of care.

I never did blood tests on kids and subject them to unnecessary needles.

How is it that a friend who I had lost touch with, showed up briefly in my life, for me to diagnose and help her daughter with cancer, only to go our separate ways again?

Serendipity. That’s how.

“You are my sunshine”

I was greeted by the sound of a screaming baby as I started my ER shift.  My stomach immediately knotted, especially now that I’m a father.  But the truth is, if the baby is screaming, she’s usually gonna be just fine. Screaming means awake, angry and very much alive. 

I walked into the room.  A woman was holding her baby, sobbing. The baby in her arms, perhaps 15 months old, had been burned. Skin on her arms, neck and face was blistering or peeling depending on where you looked.

The mom looked up at me, distraught.

“The s..s..soup.” she sobbed “She grab…she grabbed the boiling soup and it spilled…it spilled all over her. I let my baby get burned. Oh god…my little girl…I…”

I moved closer.

“Everything’s going to be ok…accidents happen…it’s not your fault…let’s look after your baby, ok?”

No help. The mom was lost in her anguish.

“Mommy?” I asked a little more firmly “Mommy, listen please–we have to do our best to be calm, ok? If you’re calm, your baby will feel it, and she’ll calm down too, ok?”

The mom finally looked back at me through tears

What about a song? Does she like songs?”

She nodded. “Um..I…ok..”

She took a breath

“You are my sunshine, my only sunshine”

“Great!” I said. I joined in

“You make me happy when skies are grey”

The nurses hadn’t been allowed to get close. The unit aid was on standby too.

I looked over to them encouragingly…and they started joining in.

“You’ll never know dear, how much I love you. Please don’t take my sunshine away”

Mom and the baby had started to breathe easier. The nurses approached, all of us singing together, and gently set the baby on the stretcher. Medically she was going to be ok, but the pain must have been terrible. She was going to need some fluid and some pain medication through an IV.

The unit aid, a big, burly fellow, likely weighing in at 250lbs was leading the vocals on the third run-through as he gently held the baby’s arm so that the nurse could get the IV in.

Within 5 minutes the medications were in her and the baby and the mom had settled.

I found myself humming “you are my sunshine” the entire rest of the shift.

Baby’s breath….

 

A baby was born last night and was not doing well.

The Pediatric Fellow warned me: “It can sometime take days for a newborn to die. Talk to the family. Talk them through the process. Make sure they understand.”

She paused, “”make sure you understand too because it’s going to be very hard on them…and on you…and everyone”

I reached for my pregnant belly. The stark contrast between my own situation–a baby alive and kicking inside of me–and the baby who was dying–was heart-breaking.

I wanted to run. But I couldn’t walk away.

As the Doctor on call, I left my busy family medicine clinic that Friday afternoon to go help. The neonatal team from McMaster had been there and left. They had tried everything–and despite their amazing, heroic measures–the baby was still dying.

So I was called. My job description: provide comfort care until the baby died.

When I became a rural doctor, I knew I was taking on many roles.  I work as a family doctor. I do anasthesia in the local hospital. I do house calls for the very sick and frail. I see kids.

I provide full cradle to grave care.

Palliative care is about providing comfort, grace and dignity at the end of life. Dying is a process and often takes time.  The goal is to ease suffering–for both the patient and the family.

It is one of the most personal, essential and humbling jobs that I do.

She was different. She was the first baby I would palliate.

I was introduced to the family. We talked through the plan, went through expectations. I reviewed what I could and couldn’t do.

I met the baby: a tiny, seemingly perfect newborn with tiny fists, tiny wrinkled feet and a head full of black hair.

My heart squeezed.

I stayed with the family all day–preparing them for what was coming, helping them understand what a normal baby breath was and what was a struggling gasp.

I left them in the evening to be with their baby girl, with them calling me anytime they needed me. Midnight, 3 a.m. I came whenever she gasped or struggled–provided her with medication to ease her discomfort and stayed until her breathing eased.

After each visit, I would go home and hug my own babies. Grateful for whatever mercy had brought them to me healthy, alive and whole.

It was a Sunday.

I was sitting in a rocking chair, holding her while she slept. The sun was warming my neck.

She released her last breath.

I gave her to her dad. I touched her mom’s hand.

None of us spoke. But we all wept.

The sound of no heart beating….

The sound of a needle driver (what we use to suture) opening and closing is barely audible.  In fact, if you ask most surgeons, they’ll tell you it’s silent.

But standing in the operating room alone that day, no radio on in the background, no nurses talking, the vital signs monitor off, the anesthetist gone…it was the loudest sound I had ever heard.

Each time I went to sew– open click, grab thread, close click, needle pass through the skin, repeat–the soft click made me cringe.

The noise seemed an affront to the baby in front of me. And I couldn’t stop thinking of him as a baby.  A baby that would never be a toddler. A child. Adolescent. Or adult.

A beautiful baby–stuck forever in this moment–an infant.

Open, grab needle, close, pass through skin, repeat.

I was a junior resident on a pediatric cardiac surgery rotation. In fact, I was supposed to be doing research but the hospital needed extra hands.  There was a heart transplant to be performed. It was a miracle for the receiving family.  Baby hearts are rare to find-having a baby born needing one is a prolonged death sentence for most.

You see, not only do the donor and recipient need to match blood types, they also need to match in size/age.

A heart too small won’t be able to grow fast enough, and will give up from fatigue. A heart too big won’t physically fit, and closing the recipient’s chest will squash it.

So finding a match is like winning the lottery–a baby destined to die gets a second chance at life.

Open, grab needle, close, pass through skin, repeat.

Except. Except the heart has to come from another baby. A baby like this sweet little boy in front of me.  I still don’t know his story. I only know that his brain had died hours before we opened up his chest and took his still beating heart out of it.

His parents had made the impossible decision and sacrifice to help another family and save another’s life–while they let go of their own son’s.

Their baby had left them with a beating heart.  Warm, huggable, kissable. But never to wake up again.  They let him go.

It was my job to put that tiny little chest back together. It wouldn’t matter if it was well done or not –it would never heal.

It wouldn’t matter what it looked like as no one would see it. Except me.  Alone in that room. Trying to honour that child. As best as I could.

Trying not to cry.

Trying to remember that this was a miracle.

Open, grab needle, close, pass through skin. No more repeats.

A Little bit of serendipity

She was the daughter of a childhood friend who I hadn’t seen in twenty years.  She bounded into my office, full of energy, laughing as she excitedly told me about her day.  As a 10 year old, she loved the fact that her doctor was mommy’s friend from when SHE was ten.

“What’s up guys?” I asked her mom and my 10 year old charge.

“Oh, I just wanted to check in with you about something.  I’m sure it’s nothing but just thought I’d double check.  Lisa has been having some nose bleeds that take a while to stop and today she seemed to have trouble swimming –she got tired quickly and said she couldn’t really breathe. I’m sure it’s just a cold”

“I feel fine!” protested Lisa, as her mom told me the story

“Sure you are, and stop putting things up your nose!” I said teasingly, as I helped her up on the table.

Of course she just had a cold, or at worst was a little anemic. I knew this kid didn’t exactly have the greatest diet. I asked about other bleeding including from her gums (yes-she doesn’t floss!) and whether she had started her period (NO!).  I quickly did my physical exam, looking for enlarged glands, open sores in her nose, and listened to her chest,  while chatting with her mom about her current pregnancy.

Out of the corner of my eye, just as Lisa was about to hop off the table, I saw them.

Petechiae.

Just a few scattered on her chest.  I lifted up her pant legs and pushed up the sleeves of her arms and there they were-bright red pinpoint spots.  And on her thigh- a large purple bruise.  A few more when I looked at her back.

“Where’s that from?”

“Oh you know Lisa, always bumping into things”, her mom shrugged.

“Well most likely she’s fighting off an infection and it’s viral given what I’m seeing and hearing” but I would like to do some blood tests.

“Mom, no!!!” Lisa whined as her mom took the requisition from me.

Her mom glanced at me with a raised eyebrow, knowing I wouldn’t make her get a needle if I wasn’t a bit worried.

“I’m sure it’s fine, but Lisa, I do need you to do this” I said. Promises of visits to the toy store were made and the tears soon stopped.

I forgot about the blood test as the week went on. Until Friday. And I saw it.

Leukemia

---

That was 8 years ago and I’ve left that practice and moved provinces. I’ve lost touch with my friend and her daughter but I know through mutual friends that Lisa is doing fine.

I’ve frequently thought about that visit and wondered, what possessed me to order blood tests that day instead of waiting and bringing them back to see if the symptoms resolved?  That’s what I had always done before and normally would do. It would be the standard of care.

I never did blood tests on kids and subject them to unnecessary needles.

How is it that a friend who I had lost touch with, showed up briefly in my life, for me to diagnose and help her daughter with cancer, only to go our separate ways again?

Serendipity. That’s how.