The best money I’ve ever spent was on a vintage fifteen-and-a-half-foot fiber glass boat from 1964.
Summer evenings spent gliding over the glassy waters of the Milwaukee River began a lifelong love of boating. But, for as much fun as boats can be, they are endless work and heartache. I’d paddled my old fiberglass boat back to the launch more times than I can remember. Yet I’d spend many times what it was worth to keep it forever, so someday I could take my kids out for the elusive perfect ride.
Since first breathing in the intoxicating blend of sun warmed vinyl, lake water, and gasoline, I found my way to a second boat. I traded freshwater for saltwater, a trailer for a slip, one outboard engine for two inboards, and small boat problems for, well, bigger boat problems.
In the last few months of owning our boat, Laura and I had run into a mess of engine issues. I’d grown weary of taking the boat out, always bracing for engine failure. We finally determined that the old fuel pumps needed to be replaced. The culprit: vapor lock. In plain English: gasoline was overheating and turning to vapor. As a result, the engines weren’t getting enough gas and would sputter and die.
After four weeks at home with Francie, floating on glassy water, we ran into engine trouble of a different kind. We found ourselves calling the cardiomyopathy “bat line” concerned. “Francie’s struggling to gain weight. She’s uncomfortable when she feeds, and she just threw up, a lot.”
Before we knew it, the cozy cocoon of our first four weeks with Francie cracked, and we were packing bags to be admitted to Rady’s CTICU.
As you might remember from Chapter Three, we made our first trip to the CTICU before Francie was born. Behind poorly drawn curtains, each room holds a parent’s worst nightmare: endless alarms, IV bags, and breathing apparatuses, all hooked up to helpless kids. The first time you see it, it knocks the breath out of your chest.
We had to take a second tour just to absorb what we had seen. It helped. A little.
I was going on my ninth, and hopefully last night of sleeping in the CTICU. The fear had faded and been replaced by tiredness and boredom. The once scary hallways were now all too familiar. The revolving door of sick kids felt more hopeful than awful. More hopeful, because so many had already left.
Our medical team was amazing! The nurses were experienced and tirelessly compassionate. They also brought me an endless supply of complimentary Gatorade. (I’m a yellow Gatorade guy, in case you’re wondering).
It was still hard to be there. It was hard to wake up to kids crying out in the middle of the night. It was hard to watch a ten-year-old doing PT, shuffling slowly through the unit attached to tangled cables and IV lines. Even when you step outside for a quick cafeteria break, you have to pause in the hallway to let a gurney with an intubated three-year-old pass by, eyes taped shut.
All I saw was Francie. Did these vignettes hold her future?
Francie’s heart had two issues. Her cardiomyopathy meant that her heart ventricles had reduced function. Basically, her fuel pump wasn’t doing a good job pushing gas to the rest of her engine. She also had two holes in her heart. The most concerning was a VSD, a moderate hole between her left and right ventricles that was uncomfortably close to her aortic valve.
At birth, the pressure in a baby’s cardiovascular systems is higher, calibrated to their mother’s body. Over the first few months, this pressure drops. For Francie, this meant there was an increased risk that some oxygenated blood that should be pumped to the rest of her body leaked from one ventricle to the other and was circulated back into the lungs. Like gasoline vaporizing and backing up into a boat engine, Francie’s leak meant that her all-important fuel, oxygenated blood, was backing up into her lungs and depressurizing the rest of her body.
The solution: one medication that lowered her blood pressure, making it easier for blood to move in the direction it was supposed to go, and another to reduce fluid build-up in the heart and lungs.
To help her gain weight, we added an NG tube that snaked down her nose and into her stomach to pump leftover milk she was too tired to take.
Since being admitted, Francie was back to gaining weight. She took about twenty to forty percent of her feed orally. The rest was pumped through the NG tube.
The truth was, Francie was probably one of the most stable kids there. But we now knew how quickly everything could change. We also had a clearer picture of what lay ahead.
Laura and I had spent much of the last few weeks asking crystal ball questions.
“What’s the likelihood?”
“What are the percentages?”
“In cases like this, what do you expect to happen?”
We hastily latched on to the idea that “ten percent of kids with cardiomyopathy heal on their own, eighty percent are managed through medication, and ten percent go on to have a heart transplant.”
But Francie didn’t just have cardiomyopathy; she had two moderate-sized holes in her heart. So here’s another statistic we were told: fifty percent of kids like Francie need a heart transplant by the age of five.
At the end of the day, Francie didn’t fit into a statistic. God had chartered a course for her that was one hundred percent planned.
As Francie and I settled in for our last sleepover, I had a new perspective on the CTICU. When Laura and I first took a tour, all I saw was rooms full of a parent’s worst fears. I was wrong. Each room is full of parents’ hope. Each tired kid dragging IVs around the unit is an inspiration. The painful cries in the middle of the night, a reminder to be grateful that people dedicate their careers to answering the call. This is a place where life is displayed in all its raw, complicated beauty, playing out, unfiltered, on a big screen.
I wish each of you could have a sleepover with Francie in the CTICU. I think you would wake up different.
I could already tell that the last nine days had been a strength-building bootcamp for Laura and I, to help with what was to come. As we climbed our Mount Everest, we reached the first of many basecamps. The air was thinner there. Our muscles ached. We were passing more experienced climbers that were coming down the mountain, hearing their stories and seeing the frostbite.
It’s likely that we will return to the CTICU. Someday, we may be in the room with all the IV bags and tubes. Francie may shuffle through the unit in an epic hundred-foot marathon around nurses desks.
We’ve stopped trying to predict the future, and now we just ask one question: “Should we be optimistic that Francie can have a good quality of life?”
The answer: a resounding “Yes.”
The road to get there is likely hard and long. But we’re ready to climb.
We had the fuel pumps replaced on the boat
We took a break from the CTICU to catch the sunset on the water. Before we left the dock, the port engine died, again.
So, the boat isn’t fixed. Yet.
Nothing goes according to plan. But I feel confident that we know what the problem is, and, with a little patience and the right team, we’ll be back to floating on glassy water for that elusive perfect ride.
