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.”
To which I replied, “You mean around 10:30 p.m. he reached up, grabbed ahold of one of the IVs in his scalp, and tore it forcefully out. Then, after we stopped the Kill Bill-like blood gushing out of the side of his head, I held him (which is no easy feat with all the wires and a head geyser) until he settled out. Then we washed his hair and changed his bed and he was no worse for the wear.”
“Oh, I guess you were here for that.”
Yeah, I guess I was.
Meanwhile, the upshot is two wolves are battling. One wolf is the good wolf, fighting for better heart function, and time to heal and remodel. The other is the bad wolf, with his high atrial pressures, lack of heart relaxation, failed valves, and pulmonary hypertension threatening Ari’s survival.
Question is, “Which wolf wins?”
In the cath lab yesterday Ari was “fragile,” “weak,” and “unpredictable.” Managing him was “delicate.” He required a lot of “support” to keep him stable throughout the procedure.
Once again, Ari looks good in the showroom, but under the hood not so much.
As one of Ari’s doctors, said, “Ari’s heart is very sick.” We love him, though he’s about as sunny as Superstorm Sandy. He makes this guy look like Tony Robbins.
Right after the cath, even Wayne, who is typically on the positive side when there’s reason to be positive, was resoundingly noncommittal on where Ari’s path will take him.
At different points yesterday we heard everything from…
“I bet he’ll get better and we’ll kick the can down the road. Then he’ll be bigger, his heart should remodel well, and we’ll fix his pulmonary valve at some point when he’s more robust. Then he lives his life.” (Good wolf.)
“He may need a new pulmonary valve now-ish, and maybe tinker around with a few other things while we’re in there. He may just need perfect valves for a chance to improve.” (Temporary wolf stalemate.)
“His heart has trouble relaxing, and his pulmonary hypertension is back, so we should make sure we keep transplant in mind as a real option, and perhaps even list him. After all, he has dysfunction in his left ventricle, his right ventricle, and his left atrium, which is covered in scar tissue as well. It may never relax. And three of his four valves are non-native, one valve has completely failed, he’s had 2 major open heart surgeries already, and he’s not yet 11 months old. (Bad wolf.)
In other words, “I think he’ll get better,” to “Let’s list him for a transplant.”
Well, that clears it up.
What we know for sure is he was fragile during the cath. For example, his heart stopped cold at one point, and they had to give him chest compressions to get it started. (In our debriefs, one doctor felt this was important to mention, others didn’t. I’d say I’d put that on the note-to-self, bring-it-up list. But what do I know. I’m not a cardiologist.)
His mitral valve stenosis gradient was reading 8 on echo. 8 would be characterized as “moderate” stenosis. Via cath – which is much more accurate than echo – it was reading 13, which is “severe.” You might think, “bad wolf” and you’d be right, but now it’s reading zero, and the valve is functioning properly. From bad to good.
We’ve neutralized one enemy for a time. Is it enough? And, as they put it, “We don’t put Melody valves here, so those numbers don’t mean what they usually mean. Well, we don’t know.”
His pulmonary hypertension was back at “full systemic” pressure. This is bad, and not sustainable long-term, though there’s hope it’ll recede again in the coming weeks/months. Post dilation of the valve it was unchanged, as was his left atrial pressure, which was reading 20. 5 to 9 is normal. Below 15 is typically manageable, above 15 not sustainable.
One doctor said, “But we released a flood gate. That can make things worse for a heart before it gets used to all this blood flowing around. Sometimes.” Cue Zep: Mean old levee, taught me to weep and moan…
Given the difficult cath and sick heart, they decided to leave the breathing tube in and send us to CICU instead of the floor.
For the first several hours he looked like hell. Eventually we extubated him. This went fine, though he needed narcotics for discomfort and he wouldn’t settle out. Rough 6 hours or so.
Eventually he settled out and relaxed. His heart rate, blood pressure, breathing, and oxygen saturation improved to a pretty good point where he was stable. (Good wolf! Well, maybe…) He actually looked improved, but tired, and is already smiling like his usual self.
Except for the fun of yanking the IV out of his head, not much happened late.
The plan is to move him to the floor today as he’s not acutely in danger, keep him and watch him, figure out a new medication plan, and send us home when he’s stable in a few days assuming no curveballs.
We haven’t yet ruled out Ari’s swim lesson on Saturday. He started them last week.
We’re still left, however, with the question, “Which wolf wins?” Well…
A long time ago, a young Navajo boy was brooding over his poor performance in his first hunt with the men of the tribe. The brooding lasted through the night and into the next day, when his father, seeing his son sulking, sat down with him.
The father said, “Inside of us all there are two wolves. From the time we are born until the time we move on from this life, they battle. One wolf is Evil. It is regret, sorrow, greed, hate, inferiority, procrastination, false pride, misery, deceit, hubris, self-pity, guilt, anger, and bitterness. And pulmonary hypertension, high left atrial pressures, atrial and ventricular non-compliance, free PR, valve failure, failure to thrive, and heart failure.”
“The other is Good. It is love, joy, kindness, abundance, loyalty, courage, honor, politeness, optimism, unselfishness, compassion, empathy, warmth, harmony, and hope. And low atrial pressure, relaxing atria and ventricles, pulmonary vasculature relaxation, easy breathing, strong cardiac function, weight gain, swim lessons, and peek-a-boo.”
The young boy went away and thought about his father’s words. Later, he came back and asked, “Father, which wolf wins?”
His father replied, “The one you feed.”
I wish it were this simple. What can I say? It’s not so easy to feed the good wolf all the time. Yesterday we were intent on helping the bad wolf pack on a few pounds.
We’re thankful to have a lot of love and support, and this fabulous little dude named Ari who needs to grow, learn to swim, fish, ski, and golf. He needs girls (if that’s his thing), college, love, kids, grandkids, retirement, a condo in Boca, and sunrises on the beach with his old lady.
Lots of reasons to help us to stay the course.
And feed the right wolf.