“Mr. President, the Soviet ships are turning back.”
“Thank heavens. Action stations stand down. Set condition three throughout the ship, but keep the alert fighters at high readiness. The enemy may be licking their wounds, but they’ll regroup and come back at us hard.”
Blood pressure down. Thank you enalapril.
Heart rate down. Thank you propanolol.
Food staying down. Weight going up. Heart function slightly better. Thank you Cosmic Cookie.
Pulmonary valve is still kaput, hanging there like a sheet in the wind, letting Ari’s blood slip backwards where it shouldn’t, and thus increasing the load on his heart. ‘Cause that’s what he needed, right?
Why can’t he just get a hangnail or something?
It seems every time Ari shows a symptom, it could be nothing, could be something, and could be a raging problem.
You know what they say, if you hear hoof beats behind you, think horse before you think zebra. Throw up happens. More likely reflux than ebola.
Seems Ari’s an exotic little boy. Let’s hope he doesn’t learn to dance.
As for surgery, Ari’s like an aging pro athlete headed into the playoffs. He’s not at 100%. He’ll need surgery in the off season, but for now he plays on while the trainers keep him buffed up and ready to roll when the lights go on.
In Ari’s sport, if he keeps winning, he keeps playing. How long? Who knows. The doctors don’t even want to guess. Every month and every pound gets him closer to better (but not good) pulmonary valve options. Right now they suck…this one lasted 4 months.
Ari’s been gaining 20 to 30 grams a day since going inpatient for treatment. As long as he can keep this up, he’s winning.
If he don’t, you know…
When I write updates, I always ask myself, “Okay, where are we now.”
First thought that came to mind this morning, we’re waiting. Working and waiting. Waiting for a miracle.
Scuffle for a nickel, struggle for a dime.
Forget about your troubles, leave the past behind.
How come the future has to take such a long, long time,
When you’re waiting for a, when you’re waiting for a,
When you’re waiting for a miracle?
Thus the title of the update. Then I realized it’s not exactly right. Sure, we’re waiting for the next move. Waiting to see what happens.
But we’re not waiting for a miracle. We’re living with him.
So it’s back to “regular” life. You might think I’m being cheeky when I say that, but it’s actually quite regular (Miralax helps) and quite fun. Right now we’re listening to Sylvia’s Mother, trying to decide if we like the original Dr. Hook version or the Bon Jovi cover.
Personally, I’m torn. JBJ sings it well, but he changed a few words. You can’t change Shel Silverstein lyrics. Blasphemy! But it sounds good.
Ari seems to like it when I sing it. He smiles at every plaintive falsetto “Please Mrs. Avery” I belt out.
I guarantee you he’s the only one.
Let us know which one you like better.
On the subject of waiting for a miracle, got word late yesterday that Ari’s cardiac ward buddy, six month old Mickey White, got his new heart last night. Early indications are that the transplant went well. Next few days are tenuous, and then the long road begins.
Rock it, Mick.
And a special shout out for Mick’s dad, hang in there, homey.