Echo of Hope

Ari’s new thing is golf. He wakes up in the morning and calls for us. When we go in there’s no hello. No, “Did you sleep well daddy?”

It’s “Watch golf. Bubba Watson!”

He’s a player, too. If he’s not shooting hoops, odds are he has a club in his hand, swinging away in the living room. We’re working on putting because, you know, we like our floors without the divots, but it’s a work in process.

On Saturday morning I was excited to ask Ari when he work up, “Ari, do you want to go watch real golf?” Of course he did, so off to Stow Acres Country Club we went. First up, driving range. We watched some guys hit balls and he was thrilled.

It wasn’t so busy, so we got a bucket, went off to the side, and teed up. He missed a few, but not necessary more than I did. When he connected, he actually got some yardage! Not even 2 and a half yet, and hittin’ ’em good.

Then we went to the putting green to ‘hit the ball in the hole!’ for a while before heading up to the first tee to watch golfers tee off.

The old guys that work there got a kick of our Ari getting a kick out of watching guys hit the ball. One guy said, “He’ll hit the ball someday soon!” I’m me, so I pulled out my phone to show him how Ari hits it now.

With strangers I don’t always open conversations with the heart thing, but this time I happened to say, “That was last month, the day after he got home after open heart surgery.”

They asked and I gave them the short version…as short as my versions get. As if it didn’t happen already, these guys kind of adopted on the spot. One asked, “Ari, do you want to take a ride in a cart?”

Of course he did. I expected the guy to just tote us around the tee area for a minute while I held Ari, but he gave me the cart and said, “Go have fun on the course. Come back whenever.”

Off we went for a tour of the back nine!

For a few groups teeing off, Ari just watched. Then we pulled up to one group as the guy on the tee was staring down the fairway prepping for his shot. He stepped up to the ball and Ari yelled, “That’s Bubba Watson!”

Dudes cracked up.

We drove on ahead. On the 11^th hole we came up to a guy very seriously lining up his shot. He stepped up to address the ball. Just before he was about to hit, he took a practice swing.

Ari belted out, “He missed!”

Guy didn’t appreciate it. Pouty ‘why are you here with your kid’ face on said golfer, so off we went up the fairway to get out of his way. Oh well.

On the 12^th there was a group playing pretty slow, so groups were backed up before them. Traffic.

This, however, made the 13^th, 14^th, and 15^th clear so we stopped on the 15^th fairway for Ari to take some shots, like the one on the video above. We putted around on the green, and played in the sand trap for a bit. It was fun. Not sure if Ari liked this or flying through the puddles on the cart better. We had a great time.

Then we returned the cart and the guys seemed ready to make Ari the official mascot of Stow Acres. “We’re here every Saturday. Come back any time!”

That was really nice of them. I’m sure we will.

If you’re still reading, you’re a hard-core Ari fan, and you made it to the medical update.

It’s a tricky one.

Ari’s energy has been pretty good recently, but his heart rate and breathing have both been creeping up. We were hopeful he was getting better, but it’s not like we saw some kind of massive improvement. Still throwing up here and there. Is it cardiac related or just a twitchy stomach associated with a feeding tube? No way to know.

We had a cardiology visit on Friday. You might remember from previous posts that anything below 50% systemic pressure in the right side of his heart is manageable, and anything below 2/3 systemic is still probably manageable.

Before/after the surgery Ari was averaging 50%, but no higher than 2/3.

At cardiology it was 80%. Engine runnin’ hot. Not good news.

Then there’s one of his other issues, mitral stenosis. At his last cath, Jim Lock, the cardiologist in chief at the hospital and Ari’s cath doctor, said “If the mitral stenosis is 6 or higher we’ll dilate. If it’s a 5 or lower, we’ll stand pat.”

It was a 5 in the cath lab. We stood pat. At his last echo it was a 5 or 6. This visit, it was 11 to 14.

Is that bad? Is this all bad?

Maybe, but maybe not. (Straight answers. We get them a lot from Ari, right?)

Remember the golfers on the course? One group playing slow creates an obstruction. The obstruction backs up all the other groups.

It’s not unlike car traffic, but on highways there are more lanes. If a highway goes from 4 lanes to 2 it’ll make traffic right?

Not if it’s the middle of the night. Cars just zip through. There’s an obstruction in the road, but with the light traffic flow, no backup.

If it’s 8:30 a.m. on the way to Boston on the Mass Pike, the backup created by the obstruction makes for serious traffic, backing up the road and all the on ramps.

Really, everything backs up.

This may be what’s happening with Ari’s heart.

Dr. Wayne believes it’s possible that the last surgery improved Ari’s cardiac function. It’s now pushing all the blood in the right direction, and with more force!

It’s like heavier traffic trying to get through the ‘lane drop’ of his mitral valve. This is backing blood up into his left atrium, and making the right side of his heart pump harder. Thus the higher pressure. This is probably also making his pulmonary arteries spasm. A.k.a pulmonary vascular resistance. (More bad news.)

It adds up to our old heart-transplant-inspiring friend, pulmonary hypertension.

Here’s the theory, if we stretch Ari’s Melody mitral valve – like thinking of going from 2 lanes back to 4 on the highway…or at least 3.5 – the backups will be alleviated! More cars on the road, but they can zip through without hitting the brakes and messing up all the on ramps.

The plan: wait 6 weeks and see if the dust is still settling from the surgery. On the off chance he just gets better, we’ll leave him alone.

But if he’s the same or worse, we are back in the cath lab on August 13^th, with a plan to stretch the mitral valve, and get rid of all the traffic.

In recent updates, we noted, “Let’s hope Ari gets better after he gets his new pulmonary valve because it’s our last intervention option short of transplant.”

If there’s one thing Ari likes to do, it’s prove us wrong. One more enemy at the gate. And now one more arrow in the quiver.

Looks like Ari’s about to use his first Mulligan.

Last shot. Can’t miss.

Time for some lessons. Someone call Bubba Watson.