Last week, after Ethan went with the angels, Erik, his dad, was telling me about him. Erik said that conversations with Ethan were great. He told me how Ethan was kind, smart, and funny. How much he liked music. How he’d start each day dancing away with the nurses in CICU.
It’s no surprise that Erik said Ethan was his best friend.
Mothers, they’re rarely shy of telling us, bond with their children in the womb. Perhaps I’m alone in this one, but when Ari came out, I looked at him and thought, “Whose kid is that?”
I had to remind myself, “Hey Mike, he’s your son.”
Maybe us guys are different, but at first I was more thinking about the cosmic connection than feeling it, trying to sort it out at 2:30 a.m. when I was alone with him in CICU just under 2 hours after he was born. It was a quiet time, just him and me, before all the people and all the procedures.
It seemed to last forever, but looking back, it was barely a moment in time. I’m not sure I thought about it much until Erik named Ethan his best friend.
Immediately after Erik said that to me, I thought, “Ari is my best friend. I love him.”
Wait! When did that happen?
Just a few months ago I was holding him for the first time, correcting myself when I thought, “I better give him back to his parents.” Or at least to someone who knows how to hold a baby.
Here I am now, hanging out with him every day at the hospital, posting pictures on Facebook, looking at pictures of him for the few hours here and there that I’m home, and writing him love notes here on his blog.
I didn’t expect this.
Don’t tell anyone. It’ll kill my rep. And don’t tell Toby! He’ll never stop moping.
What do I know about Ari now? He’s a happy boy. An easy baby (well, minus all the heart stuff and medications). And he’s a good kid. Do we know much else yet? Will he love music? Basketball? Fishing?
Art? Poetry? Ballet?
Dirt? Bugs? Buzz Lightyear?
I don’t know yet. All I know is this: he’s my son, my best friend, and I love him.
And the rest? Can’t wait to find out.
**** Medical Update ****
Sorry for no smooth transition from musings to medical, but I’ve been thinking about my best friend and I wanted to get this out, but I know everyone is more interested in what’s going on since the surgery. Here’s what’s up:
Thursday – Surgery Day
After the cath revealed how dire Ari’s condition was, there was a big shuffle all week trying to get him into surgery as soon as possible. Dr. Tworetzky worked on shuffling logistics all week to make it possible. As he put it, he did everything but call the White House to intercede.
Ari went down at 7:30 a.m. on Thursday. Dr. Emani, our surgeon, said he attempted to repair his mitral valve, but ended up replacing it because we needed it to be as perfect as it can be. The reason for coming as close to perfection as possible is that we believe Ari’s mitral stenosis was contributing to his pulmonary hypertension.
Think of it like this: put a redhead in the sun without sunblock, and 5 minutes later you can hear the sizzling. A redhead can be that sensitive to burning.
We believe obstructions to Ari’s blood flow in his heart are like the sun to a redhead. If we left stenosis in his mitral valve, even a little, it might not be enough to prevent pulmonary hypertension. The only way to get him “in the shade” would be replacement.
Unfortunately, they actually don’t make mitral valves for kids Ari’s size. The Melody valve is built for pulmonary valve replacement. The pulmonary valve is an outflow valve, and the mitral valve is an inflow valve. Pretty different.
What Dr. Emani said to us is, “Well, I turn it upside down, make some other adjustments, and put it in the mitral position.”
Mike and Erica: “How many of these have you done?”
Dr. Emani: “4”
Mike and Erica: “How many have ever been done anywhere?”
Dr. Emani: “4”
Let’s make that 5 now.
In fact, the Melody valve is new even for the pulmonary position. On the Melody website, it’s says right at the top, “Humanitarian Device. Authorized by Federal law (USA) for use in pediatric and adult patients with a regurgitant or stenotic Right Ventricular Outflow Tract (RVOT) conduit (≥ 16 mm in diameter when originally implanted). The effectiveness of this device for this use has not been demonstrated.”
That last line is confidence building, isn’t it? And that’s for what’s it’s built for.
Good thing we have Dr. MacGyver on our team.
Anyhow, it went in fine, and he was also able to remove more scar tissue as well.
Friday to Saturday
First, here’s what we need:
- Pulmonary pressure 50% or below systemic pressure. This is the measure of the pulmonary hypertension. A “normal” heart is around 20% to 30%. Below 50% is probably manageable. Above that, bad news.
- Low left arterial (LA) pressure. This is the measure of how well his ventricle can relax. Relaxation contributes to pulmonary hypertension and cardiac output. Normal is 5 to 9. 15 or below is probably manageable. Above that, bad news.
- Cardiac output of 3 plus. This is how vigorously the heart is pumping blood to the body. 3.5 to 4.5 is normal. Above 2.5 is probably sustainable for growth. Below 2 or 2.5, bad news.
When he came out of surgery, here’s what he had:
- Pulmonary pressure as a % of systemic pressure of 55%.
- LA pressure of 15.
- Cardiac output – estimated 2 to 2.5.
Right on the line. Just like Ari, isn’t it?
While they got done what they wanted to in surgery, it doesn’t mean he’ll get better. With these numbers right after the surgery, the doctors were universally noncommittal about his prospects for getting better. (Getting better means chance at life.)
A lot of wait and see. No optimism, but no pessimism either. Just guarded. Walking the line.
After the surgery, he was having “episodes” of spiking pressures every hour. His blood pressure was through the roof, and his LA pressure was as high as 30. This was very bad.
The attending in the CICU was standing over Ari like a guard for hours and hours, arms folded, staring at him.
It was comforting to have him, but scary that we needed him. He, as well, had no optimism.
Given all the episodes, they ordered an EEG to measure brain activity to make sure he wasn’t seizing.
It wasn’t a good night for him or us.
Saturday to Now
His episodes stopped and the EEG came back normal. They believe that the spikes were pain related from the open heart surgery. Ari likes his meds and is hard to gauge because he’s been on a lot of narcotics and paralytics already. He’s been stubborn since even before he was born when they had to stick him twice in utero to knock him out.
His pressures have slowly improved to what you see here:
If you take the yellow 31 and divide by the red 79 you get 39%. This is his pulmonary pressure as a % of systemic pressure. Improvement since the previous day.
His LA is 7 here. It’s had been floating between 7 and 10 while he was paralyzed. Again, improvement.
They lifted the paralytic to see what would happen, and his numbers went up but didn’t spike. This was a good sign.
By the time we left yesterday, the attending (guard from previous day) said, “Yesterday I was very worried and unsure of his prospects. Today I’d say he’s giving us some indications that he may be headed in the right direction.”
Doesn’t sound like much, but he might as well have been Ed McMahon at the door with our ten million dollar check.
We barely have an indication that he’s headed in the right direction. He’s very heavily medicated right now, and still on a lot of support that he can only have in CICU to keep his pulmonary hypertension in check.
His breathing tube is still in. We’re just starting feeds of 1 ml per hour. (Go measure 1 ml and see how far you’d get on one of those per hour.) We don’t know what will happen as we remove his supports one by one.
And after all that, he needs to have enough cardiac output to eat and grow. It’s going to be a few months before we can really say one way or another how the chips are going to fall.
A lot of chips have to fall between now and then.
The first ones fell Friday after the surgery…and landed on their side.
Yesterday one tipped ever so slightly in the right direction.