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Ari Bam Bam

Early last week, I was asked  introduce Dr. Jim Lock, Cardiologist in Chief at Boston Children’s Hospital, at a major event focused on raising money to support research and innovation for the hospital. I only had a brief window on Tuesday night to prepare remarks for Thursday’s event as I had to, you know, work like everyone else during the days. By the time we’re done with dinner for the kids, bathtime and bedtime, and prepping meds for the following day, it’s usually pretty late.

No motivator like pressure, right? Here are my remarks and the pics I used in the presentation.

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A Year at Home

Ari 17 months

Last week on the news I heard a fresh version of an old story. Man was working on daughter’s car. Car jacks fail. Man gets pinned under car.

Daughter sees dad pinned. Goes over to car, says a mental “Shazam!” and miraculously lifts car off dad. (In the future she never drops the subject as she angles for dad to pay her unfortunate gambling debts, but that’s not important right now.)

When I’m in the hospital or somethin’s a-brewin’, Shazam!, I can get a deusy of a blog post out as easy as toastin’ a Pop Tart. When it’s just another day on the lake, what can I say, it’s more fun sitting on the dock watching the boats go by than writing.

Seriously, three middle-aged chicks just floated by on their party boat playing power ballads (…and I don’t wanna miss a thaang…). One was talking about how her homemade Buffalo wings kicked ass. The other was smoking a stogie. How can you beat that!

Still, I’ve been slackin’ so I thought I’d give you a straight up update. Or is that a straightupdate? Whatever.

Here’s what’s been going on life and health-wise, and a little by the numbers update just because.

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Days like today give us opportunities to make choices. What to think. How to react. Since I’m pretty plugged in to social media compared to most 14 month olds, I’m seeing plenty of both.

Beneath it all, there’s this other choice. A choice that – whether we’re thinking about it or not – accompanies the others.

That choice: What to hope for.

It’s easy to hope for comfort and healing for the marathon victims and their families, for the safety and efficacy of our law enforcement officers, and for justice for the bad guys.

Here’s what I hope for that’s not so easy:

1 – Rage short and focused, not long and broad. Hate and anger are real. I’m not perfect, I feel them. But they are terrible things. Difficult to contain. It’s all too easy to lump whole groups of people in with the bad guys.

Religions and countries are not the bad guys. The bad guys are. They tried to make a difference with hate, and they got me with it. At least for today.

I feel what I feel, but if I hold on to the hate or let it spread, they win. I hope to let hate go.

2 – Act, don’t stew. Frustration and anger always lead to armchair quarterbacking, but rarely lead to action. I don’t mean I need to take action in this particular situation as I think the Feds wouldn’t appreciate it much, but I do have a choice today. I can make a difference.

I can do something today that makes people’s lives better. People are hurting on the news. They deserve help, but today I can’t help them.

People are hurting quietly everywhere I look. Their stories are not on TV. I can make a difference for them. I hope I do.

3 – Remember. I will remember today. I’ll remember what happens. I’ll remember the choices people make: What they choose to say, what they choose to do, and what they choose not to. I will remember what I do as well.

But will I remember to do something tomorrow that makes the world a better place? Will I remember next week? Next month?

The spirit of making a difference strikes many of us when the day reminds us that we should. Many days don’t. I hope I remember this, remember to make a difference on days when nothing reminds me to do so.

I hope I remember. If I don’t, I hope you remind me.

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arihome95

First off, enjoying my vaca here in Flaahrida. Evidently vacationing at the G-parents’ house is a bonus for the parents since you can’t give me to just any babysitter. Even though I’m a treat and a half, you gotta be trained up right to watch me.

Been enjoying the pool and the beach. Had a nice visit from fetal cardiac intervention brother Eli who lives here in Dixie. And went to my first Sox game. Only spent 3 innings in First Aid cooling off. It gets hot down here!

It was nice, though, heading in to First Aid and just telling them that I’m not just any schvitzy kid. 30 seconds of the story and they rolled out the couch for dad and me to stay just as long as we pleased. A little A/C and I was ready to go back out and see the Sox blow the game at the end. Do they do that?

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Ari’s Mail Bag

Ari this morning

Oprah: Ari, what’s shakin’? Where you been? What you doin’?

A: Since the mitral valve dilation, been pretty good. Essentially quiet life. Been gaining weight slowly but steadily except for the 3 week RSV diet. RSV is bad bad bad for kids like me who already take 6 medicines to help my heart and keep my lungs clear. Because, when you need meds like that, what you really want is a lung infection, right? At least now I know what it feels like to be an 80 year old chain smoker. Something to look forward to.

Since then, pretty quiet. Still not eating much by mouth, but when I’m not sick, been keeping food down pretty well. To give you a sense of what the mitral valve dilation did for me, before I went in I was throwing up 3 or 4 times a day. Ate no solid foods. Nothing by mouth. No toleration of high calorie formula. We overnighted at the Barf-o-Rama hotel.

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What’s Up? Ask Me.

RSV ER

First, this is a pic in the ER from a recent visit to the Children’s. I got RSV a few weeks ago despite getting the vaccine every month and it threw me for a loop. Home now and doing much better.

It’s been busy for the last month, so haven’t had time for an update. Meanwhile, people ask me questions all the time. Let’s have some fun with that. Introducing…Ari’s Mail Bag.

In the comments below, ask me questions. What’s up with me. Politics. World affairs. TV shows. Celebrity gossip. Dating advice. Sports…anything you like. Sky’s the limit. I’ll answer all I can, hopefully sometime this weekend.

Until then, peoples…

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Walk the Line

Ari back home

I wasn’t the worst player on my high school golf team, but I was nowhere near the best. 50/50 I’d club a drive up the middle for 230 yards, or I’d shank it dead right into the woods.

Either way, Coach Hennessey would say, “Some days chicken, some days feathers.” It worked in any case. See the beauty of it?

Yesterday was chickenfeathers.

The echo looked OK. Showed some improvement, and, for shiz, this is what we’re looking for. Better than bad is good, right? We couldn’t tell the status of his left atrial pressure via echo (feathers!). His pulmonary hypertension reading was lower than before (chicken!), but still not great (feathers!). This takes a while to get better typically anyway if, indeed, it’s going to get better, so headed in the right direction.

In any case, we’re home. Chicken!

Since the cath, Ari hasn’t thrown up, and this is the biggest clinical sign that his mitral valve needed to be dilated to improve his cardiac function to a temporarily workable level. It’s wide open for the time being. Chicken fricassee! Everyone is glad he’s doing well, but we all hoped it would be a even little better. Let’s just hope it’s enough to gain some weight and kick the can down the road.

For now, it’s back to doing what we do. So let’s all join in and sing in time…

I keep a close watch on this heart of mine.

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It’s Pajama Time!

And the verdict is…It’s Pajama Time! Besides that, no news on how his heart is doing. The procedure is trying and he’s taken a few days to settle out, but he’s in a better mood now. Obviously.

Plan is echo in the next few days to see what’s up. Until then, we won’t know. This, of course, drives us bananas.

We need some solid improvements by echo to be in an OK place. His right side pressure needs to be lower. And we need to get a sense that his left atrial pressure is lower, which you usually can’t measure except in the cath lab, but they put a new hole in Ari’s heart that can give us a bit of a sense of how that’s doing, but not much.

You can think of both of these pressure readings like a car and RPMs. There’s a green zone where we all drive every day, a yellow zone you shouldn’t drive in for long, and a red zone that you can, indeed, drive in, but after a while you’ll blow the engine.

Ari was driving in the red zone before the cath. He looked fine on the outside, but ultimately it’s unsustainable. The engine can only take it so long.

Unlike a car, however, we don’t know what, exactly, his green zone territory is. All we know is it’s not where he was a few days ago. Not exactly bleak, but we need some real movement.

More info as we get it.

Meantime, when the world goes bananas, get in your pajamas.

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Feeding the Wolf

Family Photo

Whahappen?

Conversations with 5 senior attending cardiologists and we’re still trying to figure this out.

People have this nifty capacity for interpreting the same situation differently. For example, I left Ari in CICU just before 1 a.m. Woke up at 6 and called to see how he was doing. Much better, his nurse said. Had a quiet night, and his numbers look good.

“Though,” she says, “he was up to his old tricks. Was rolling around in bed and one of his IVs fell out. He’s no worse for the wear. Oh well.”

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Action Stations, Action Stations. Set condition one throughout the ship. This is not a drill.

Times change. Foreign policy evolves.

The blockade worked for a while, but intelligence suggests that the enemy is gathering, and in possession of weapons of mass destruction. Possession of weapons of mass destruction is an act of war. Boston Children’s Hospital forces are thus preparing to invade.

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