DAY 11
Gracie and I watch an awards show; the actresses slink across the stage and speak in baby doll voices. Plant your fucking feet, I want to tell them. Talk in your true register. But they are oblivious to this hospital room. Even to Gracie, who looks at them with awe and says, “Their hair has sparkles.”
Gracie picks up a piece of my hair and begins to suck on the ends. This should charm me; she wants connection. Instead, somehow it bothers me; it seems like a babyish act, a crutch, at the exact moment when I want her to be strong. “Please don’t do that, sweetie!” I say. She shoots me a look out of the corner of her eye, confirming what she suspected, that I’m not where she needs me to be.
True. Half of me is watching the show, while the other half catalogs signs and symptoms of VOD: rapid water weight gain, distended belly, painful enlargement of the liver, elevated bilirubin, renal failure, jaundice. And the list goes on. The definitive test is a sonogram that, if the liver were shutting down, would show a “reversal of flow” in the main arteries. Essentially fluid running backward through the system, filling the abdominal cavity, filling the lungs.
We do not want reversal of flow. No one does. We want all the fluids of the body to run in one direction—through the liver, the urinary tract, and out, with ease and flow. Ease and flow.
DAY 12
I watch her stomach for an hour before she wakes up. Is it more swollen than yesterday? Hard to tell. Her breathing is labored; her whole body shudders slightly on each out-breath.
A nurse, not Bobbie, arrives about noon with a measuring tape, as through she is ready to do something as innocuous as take up a hem. Instead, she wraps it around Gracie’s belly, back to front, just below the belly button, and records the number on the chart.
“Is it better or worse?” I say.
“This is our baseline,” she says. “Now we’ve got a number against which we can measure growth.”
“Why didn’t they take the baseline before Day 10?”
“I’m not sure about that,” she says, sounding defensive. I look at the number she records on the chart. Our world expressed in two digits.
On the floor, here to visit us, are the Pedersons. This is the family we met on the day Gabriel threw Brian’s glasses over the edge of the balcony, when they dropped four floors without breaking. The day the mom, Cindy, and I made friends by exchanging gum.
Jake is still going to clinic almost daily, and they’ve made the short trip from clinic to our unit to say “Hi.”
“She’s feeling pretty awful,” I tell Cindy at the door.
“We won’t stay. Jake just wants to give her something.” I look at Jake; he’s dyed his hair blue. She’ll like that.
“Come in.” I want Gracie to see this boy who’s traversing the rigors of transplant with a genuinely blithe spirit intact. With a blue head.
Jake walks into our room with a giant bottle of Sponge Bob bubbles. “These are for you, Gracie. When you get bored of TV you can blow them into the doctors’ faces.” He sits on the edge of Gracie’s bed and looks up at her monitors with intent, as though he might have an opinion about her oxygen saturation or blood pressure. He looks at the lunch tray, untouched. “Gracie,” he says, “you don’t have to stop eating as soon as your mouth hurts, you know. Chew with your back teeth and swallow fast.” The seasoned con passing advice to the newbie—here’s how to adjust to life in the joint. I don’t tell him, and neither does Gracie, that it’s already been many days since she’s eaten.
Gracie takes the bubbles from Jake and holds them against her chest as she watches the TV, impassive. I stroke her head. Jake’s mom and I exchange information in coded whispers and glances. We run through the transplant people we know in common—who is doing well, who isn’t. We dart our eyes upward to indicate when a child has gone “upstairs,” to the PICU. To intensive care. To the ventilator.
The PICU is the place we all most don’t want to go. We’ve seen children transferred upstairs for respiratory failure, but we’ve yet to see a child come back down.
In the middle of our talk, Gracie gets sick. There is nothing in her stomach to vomit; she convulses in heaves, throwing up something that looks like algae. Green. Vibrant green. Jake looks at her small, shuddering body. He doesn’t look away. The Pedersons get ready to leave. Gracie turns away from the TV for the first time that day and says, “Bye, Jake.” Just two words, and the only ones she’s said to him, but a rare acknowledgment. The energy to speak costs her, her vocal cords are stripped raw, but she says it again, “Bye, Jake.”
DAY 13
Her stomach is growing. She’s gained two centimeters in diameter since yesterday.
Am I transmitting fear to her in a thousand plucks at her blanket, a hundred rubbing motions to her head? I order myself to hold still. Don’t smooth, fix, tidy, wipe, brush, arrange—anything. Sit next to her. Quietly. Try that. It is excruciating to do nothing precisely because there is nothing I can do.
DAY 14
Another three centimeters. There is a great deal of fluid in the abdomen, and the liver is enlarged, both bad signs. Dr. K orders a sonogram to determine whether there is also “reversal of flow.”
The sonographer arrives at 10 a.m., the middle of the night for Gracie. I am determined that the woman do her job without waking Gracie. It is crucial she get all the rest she can.
The sonographer is in her midfifties with an accent I can’t quite place. She is plump and gentle and perfectly happy to go along with my plan to keep Gracie asleep.
Under Gracie’s nightshirt the skin stretches across her distended stomach, so taut it’s nearly translucent. The sonographer pours warm gel onto the roller ball of an imaging wand. Gracie stirs when the wand touches her body, but doesn’t wake. The wand rolls left and right as the woman gives her full attention to the grainy lunar landscape on the screen. I try to read her face. She looks calm and focused. She reaches all the way over Gracie’s body to get a better view of the other side. I slip both hands under Gracie’s back and press lightly to remind her, in her dream, that she’s with me.
The woman finishes her work, puts the wand away. I wipe the gel off Gracie’s stomach with a tissue and pull her nightshirt down. It is dark in the room; we’ve left the lights off. I look at this stranger, who has peered inside my daughter’s body. She knows the true condition of Gracie’s liver. The liver is everything, all of everything. If the liver is not working, there is no way to get another. If the liver shows reversal of flow, if this is VOD, we are in a free fall.
I have to know, I have to ask. And I cannot know, I cannot ask.
Brian is in New York. My mom is in California. Gabriel is with Denise at the apartment. All our lives hang in the balance—yes or no to reversal of flow.