Day 4. Air, beautiful air! Over the five years I have had ALS, I forgot how it feels to take a full breath. I wish I had done this months ago. (Dr. Libby, take that and rejoice!)
My mom arrives, and the first words out of her mouth are, “You look so good!”
Evan tells crazy stories about our pets. We get a room in 2R, the respiratory unit, where there’s an actual cot for Evan. It is all around a joyful day.
Day 5. We are settling in nicely for what we hope won’t be a long stay. Evan organizes the machines that will keep my lungs clear and pumping. I nap, and mom collects some food from the cafeteria. Today ends with a far more solemn Evan reading the manuals for the machines. He also dives into learning the functions I will need to survive. I am a patient guinea pig, even when it hurts, even when it feels like I am suffocating. Mom watches with fear in her eyes. Even at age 32, I will always be her baby.
The nurses start giving me nightly injections of blood thinner in my stomach to prevent blood clots, and an inky black substance that no one else can see appears beneath my fingernails. I know exactly what it is, though. Something wicked this way comes.
Day 6. The hospital stay has been long enough to wear on everyone. The black thing runs up the veins of my wrists.
Evan develops what he calls “hospital hair,” a product of not showering and running his hand through his hair in anxiety. He says he worries whenever he is away from me. I worry, too. I’m an expert at that. When mom is gone for the night, I ask Evan a question that has been weighing on me. “Will you ever get tired of the sound of my machines?”
He puts the manual down.” No,” he says without hesitation. “That’s the sound of our forever.”
Day 7. Friday rolls around, the day of the scheduled surgery.
The pulmonologist comes in and says, “You’re stable and ready to go home once you get your ventilator from the equipment center.”
My heart soars! The excitement in that horrible beige room is tangible.
“We brought our ventilator with us,” Evan says, pointing to the machine we received from our clinic.
“That’s an Astral, and you need a Trilogy. No one in the hospital even knows how to work one of those.” The insidious black has climbed up my arms and is webbing across my neck.
“I bet we get Trilogy this afternoon and are home tomorrow,” Evan says.
“Hopefully,” the doctor says. “The equipment center is only open business hours, so either you get a Trilogy today, or you’re here for the weekend.”
My heart plummets through my stomach and goes splat on the floor like a rotten tomato.
This Trilogy doesn’t come today.