Echo of Hope

When I first started writing Ari’s blog, the primary reason was exhaustion. I was on the phone until 1 a.m. giving updates several days in a row. It was too much. So I started to write.

People asked if it was therapeutic as well. Sorta maybe, but during a crisis it’s more war chronicling than journaling. “We’re in the foxhole. They’re shooting at us.” Soothing? No so much.

As I’ve noted in the past, the blog eventually gave Ari a voice. That’s when it became more for me than a convenient excuse way to avoid people give updates. And this was before Ari’s voice really came alive when he started posting his own updates.

Here on Echo of Hope, Ari has:
– Been a spy on a secret mission
– Won the World Wrestling Federation heavyweight championship
– Been interviewed by Time Magazine
– Starred as a special guest on Who’s Line is it Anyway?
– Delivered the commencement address at Harvard Medical School
– Reviewed Erica and me as parents

And more.

As of this moment, however, Ari will write no more posts.

When Ari was a baby, from the earliest of days, he would look up at us with that huge smile and twinkle in his eyes. And I’d wonder, “What’s this kid thinking?” With 16 hours a day at the hospital with nothing to do but sit there with him (and make life altering decisions like choosing between Starbucks, Au Bon Pain, and the cafeteria for coffee), your mind wanders…

What’s my little Snoopy up to today? World War I Flying Ace? Joe Cool? World-Famous Novelist? It was a dark and stormy night. Suddenly, a shot rang out!

Didn’t give no clues, though. He’d just smile and suck on his monkey binky and leave me wondering.

But I don’t wonder anymore. He tells me what’s what, like he did this morning when I went into his room. He woke up still woozy from the anesthesia, getting his ‘where am I’ bearings. He opened his eyes, looked at the IV bandages on his wrists, looked up at me, and commanded, “Boo boo off!”

And started crying.

“Ok, let’s fix it. I’ll get mommy. In the meantime, let’s get you a fresh diap.”

Normally he’d say, “Poopies. Diaper rash. Butt cream.” But today he just cried.

“Do you want to go downstairs, Ari?”

Sob…sob… “Noooo…”

“Do you want to read Max?”

“Noooo….” Sob…sob…

“Do you want to watch a football video?”

Sob…sob…“…yeah….”

“Okay, comin’ right up.”

Boo boos off. Superbowl highlights on. Recovery from cath underway.

I don’t need to give Ari his voice anymore. He has his own. It used to be fine for me to play Bruce Willis in Look Who’s Talking, but the premise doesn’t hold once the real person emerges. Especially Ari. (And I’m not doing the Herman’s Head thing.)

Even at the hospital yesterday, the nurse asked us, “Wow, does he really talk this much? You know, between shots?” (See video below). Yeah, he does.

We’re way past counting how many words he has. Somewhere up over a thousand. He essentially says what he wants. He probably has 50 books memorized…he knows what all 44 hippos do. Does the ABCs front to back. Rows Rows Rows his boat gently, merrily, and dreamily. And can sing most of I Can’t Get it Out of My Head right along with me. (Yes, he’s a smooth 70s kind of guy.)

A few days ago, Erica asked him, “Ari, what are you doing?”

After a brief pause, his reply… “Ari thinking.”

What he thinks and what he says are his turf now, not mine.

So no more articles on the blog from Ari, at least until he’s ready to write them. Stay tuned, because it probably won’t be too long.

***Medical update***

Yesterday Ari had a cath. Erica made him a book of what the process was going to be like, laminated and everything. We’ve been reading it to him for days. So he was ready.

Pre-cath he had a great time. He loved his special outfit. We went through a whole roll of paper towels shooting baskets in the trash. Maybe 300 shots.

He wouldn’t stop for anything except for the little girl who happened by outside our room. He stood there staring at her. He said, “Hi.” She said, “Hi.” Then he waved at her and she waved back. Eyes locked…deep gaze. Then Ari pointed to his head, said, “Haircut,” and smiled. (Wonder where he gets it…)

Soon after he went in. When he came back, he wavered between deeply asleep and very uncomfortable. He was also quite tachypnic (fast breathing), and hypertensive (high blood pressure). They gave him a big hit of the anesthetic earlier, given his history as heavy user, so he was pretty out of it, so much so that when it was close to time to go home, we were leaning towards staying the night to have medical care at the ready. He didn’t look very good.

However, 6:30pm rolled around and he started to get back to being himself. His breathing and numbers were improving, and he was starting to come to. The anesthesiologist asked him, “Do you know who that is, Ari?”

He says, “Mommy.”

And who is that?

“Daddy.”

I figured, let’s see how lucid he is.

I asked, “Ari, who is that?”

“Dr. Wayne,” he says.

Wayne smiled. So we start the process of getting him dressed to go.

Erica says, “Ari, let’s put on your Mickey Mouse shirt.”

“No no no! Basketball shirt!”

That’s Ari. Always a fashion show. Certainly ready to go home. By the next morning, he was shooting baskets like normal.

So what did we learn?

The purpose of the cath was twofold: dilate the Melody mitral valve if needed, and evaluate for possible replacement for his failed pulmonary valve.

Re: the evaluation, the pressures in his heart are dangerously close to the red zone, so we’re playing our last card: fixing the pulmonary valve to see if it helps. It may or may not. A big problem of Ari’s is relaxation in his left ventricle. It’s “stiff” and doesn’t “comply.” Will the pulmonary valve, or possible additional EFE resection help? We don’t know.

But in any case, we’re fast-tracking getting it done. Should be done in the next month or two. His Melody valve is performing well and is wide open. It was mildly stenotic, but not enough to dilate. Since dilation is tricky, and they don’t know how many they can do, they decided to hold off until it’s really needed.

For the last year-plus, a big question has been balancing putting Ari though the ordeal of an open-heart surgery versus getting him the pulmonary valve he needs. Imagine you hit 3,000 miles on your car. The sticker says you need a change. Do you need it today? Tomorrow? Another 50 miles won’t make a difference. Another 1,000 won’t. Probably 4,000 won’t. But at some point, you’re hurting the engine. So…when does it get critical? It’s gradual. You just don’t know when the damage is starting.

Except it’s not as simple as getting an oil change. It’s a possible life saving oil change, but it’s also dangerous, even life threatening. Ever try to fix something but you end up doing more harm than good? This is a real possibility, and we don’t even know if it’ll help.

In any case, he’s past due for the oil change. Yesterday we looked under the hood in the cath lab. It seems if we leave it unattended to, the engine will probably fail. In fact, we are going to meet with the transplant team again soon so we can understand more about that potential path. It’s no simple solution, though. Heart transplantation has been described to us as “trading one disease for another.” If it’s our path we will take it, but it is a path fraught with danger.

Here are the overall survival rates of pediatric heart transplants as outlined in the 2012 Registry of the International Society for Heart and Lung Transplantation Report:
– 90 percent at one month
– 82 percent at one year
– 70 percent at five years
– 59 percent at 10 years

My guess is Boston does better than this, but this is the gist. There’s much more than just survival in question. An easy path and easy life it is not.

So next month or so we play our last card with his native heart: replacing the pulmonary valve, and maybe some other tinkering while they’re in there. We’ll learn more about the specifics soon.

If it doesn’t work, the path forward is cloudy. As for the odds of whether it will work, we literally asked, “Do you think he’ll make it to adulthood?”

The answer… “I don’t know.”

Hours and hours and hours of talking. Days of analyzing and analyzing. It still all comes down to maybe he’ll get better and maybe he won’t.

For now, the enemy is back at the gate. We’ll shoot baskets and watch football videos as we prepare for the coming storm.