His black eye makes me catch my breath.
It brings back all the memories: Porter’s vaccine injury occurred as a baby and he is 23 today but it affects us still.
Yesterday, he had a seizure at his day program and slammed his face into a table. He is bruised and swollen, but otherwise fine. This happens to him today when he is an adult, and it happened routinely when he was a toddler. In his first year he had so many seizures he needed a special alarm to tell us when he stopped breathing. Our biggest fear was that it would happen in his sleep when no one was next to him to know. Problems had solutions, but the solutions had problems. From: A Bad Reaction- Year One (Skyhorse Publishing)
The day care isn’t big on kids that stop breathing at school. They say it more nicely than that, but this is the gist. In the last seizure he needed CPR again, and this is the issue that leads to a bigger issue. When we leave the hospital this time, they tell us Porter needs to be hooked to a machine when he sleeps. This entails sticking little circles to his chest, the kind you see attached to patients in TV shows when their hearts are hit and miss.
Hollywood leaves out the part about babies that need them, or that babies have a tendency to yank off the wires. Or that the monitors have the tendency to have false alarms: anytime the child gets tired of electrodes being stuck to their bodies. The first night sets the tone, when the alarm blares within minutes of bedtime. Brian jumps up and runs, then screams to me that everything’s fine the way cops yell, “Clear!” when they don’t find a gun.
Brian is less animated the next time and finally says nothing, except a sigh, as he slides into bed next to me. We do this each night, trading shifts to reset the monitor, often finding Porter sleeping with the electrodes gripped in his hand. We manage it, or don’t, but the daycare is adamant: They can’t assume liability for babies that might die.
The manager does the dirty work and pulls me aside as I arrive in the morning. She wears a sweatshirt that reads, “Cowgirl up or go sit in the truck.” I want to cowgirl up, but I’m sent to the truck. “It’s in our bylaws,” the manager says, smiling. She says no in a nice way because she is a nice person, but no is no and Porter can’t stay.
“It has never gone off with a real problem, all that blaring is false alarms,” I’m back in defensive mode. I hear it in my voice as if I’m listening to someone else. It is a person that I don’t like.
“Our bylaws are very specific,” she says. “Breathing is a requirement.” She smiles again. I nod to show her I think breathing is important too. “We like Porter. We like you. We just don’t like it when bad things happen.” It’s hard to argue with that one, so I collect my son and collect his monitor and we walk towards the car as he chews on the wires.
Porter still stops breathing sometimes. The most recent time was a year ago.
Porter is on a gurney at Minneapolis Children’s Hospital. He is now 21 years old as they take patients until they are 22. He lies on a bed and his hairy legs stick off the end. I can see them since they cut off his clothes in the ambulance. He’s had a seizure and was delivered here by ambulance. His helmet rests on a chair beside him. The curtain to our exam room is open and people hurry in and out. The doctor whispers to the nurse and the nurse gets on the phone.
The seizure won’t stop. Not in the ambulance ride over. Not in the ER after three doses of Valium. Not when they add medications to the medications to calm him down. It only stops when everything stops, even his breathing. The seizure has sucked the life out of him.
The doctor moves me out of the way and yells for help. People arrive out of nowhere. They are coming from other rooms and upstairs. Someone in blue scrubs down the hall gives him CPR. Even the doctor looks scared.
They need to move him to a special room. The doctor tells me this and doesn’t wait for my reply; they are gone. The nurse grabs his chart, his helmet, his clothes. He is carted away in pieces. Time passes quickly but feels very slow. They are in the resuscitation room and the doctor appears. He says Porter is doing well. Doing well means he isn’t dead.
“Porter, it’s Mom, can you say something?” I ask. Click. Porter opens his eyes, first one, then the other. Click.
“Can you say something?” I repeat.
Porter smiles. “I want Chicken McNuggets.”
Pause. The doctor laughs. “That’s a first.”