Earlier this week Ari’s blood pressure was regularly bottoming out. By 10 a.m. Tuesday his systolic pressure had dipped into the 30s. I told Erica on the phone. She said, “Is this it? Should I rush in?”
Ari was struggling mightily. So much so the doctors had the conversation with us about how Ari wouldn’t survive CPR and ECMO again. Those are off the table. He needs to keep it together. Last of the 9 lives. Gunfight at the O.K. Corral.
Then, as he has done so often in his short life, he dug in and attacked, pressing the enemy with great fury and relentless determination.
Now he’s awake(!), alert, and royally pissed off. He still has the breathing tube in and hates it. He’s on enough narcotics to stop an elephant. (No joke.) Pressures are better but still concerning. He knows he can’t talk, so he keeps mouthing “Help me. Help me.”
So that’s what we’re doing. I just finished the night shift. We watched the Red Sox and Celtics, sang Scarlet/Fire, Tin Man and Rosanna, and tried to keep calm and…no, screw calm. Stay pissed and keep fighting.
Erica is with him now as we literally drag the rejection causing antibodies from his blood. I’m in the cafeteria grabbing breakfast and getting ready to dive back in. Dad just got here to tell Ari bad jokes and keep the Schultz legacy alive.
From here forward Ari has to hold the line, stay alert and moderately upset, and wean sedation in preparation for taking the breathing tube out. Can’t be on so much morphine that you don’t care about breathing once the tube is out. He needs to be ready to rock. Could take days or who knows how long. That’s a lot of Bruins highlights.
And he’s by no means out of any woods. When we ask the team what to expect in the days to come, they tell us they’re thinking more hour by hour. One thing at a time. Ari has been throwing curveballs left and right, including this morning with fevers and smaller blood pressure swings.
Meanwhile, we’re hammering at the rejection with every med and therapy possible. If it can be pushed back it will be. As we do this, infection becomes a dangerous threat. No immune system at all. No choice. This is the path. And a long path it is.
Still first things first, let’s get that tube out. Time to see what the man has to say.
Brief house update:
- We have a rental in Sudbury! 5 minutes from the house. Starts May 1. Will figure out mild homelessness until then.
- We’re putting plans together and permitting for the new house now. Planning to put something up very similar, just safer and better engineered. Permitting hopefully done in 8 weeks. Then we can get started.
As long as Ari walks out the front door of the hospital, though, we’ll be fine. The house is just a house. Home is where your family is.