On the morning of Friday, July 13th, Tess wakes us up. She does this with a cry, as she often does, but this one is different. Deep and guttural. Like a rawrrrrr. Not at all her usual high-pitched one. My wife gets there first. She calls out to me to find some baby wipes. Apparently Tess has had an accident in her bed. We are low on wipes. It's been on my to-do list for a couple days, to buy more of them. Since we're low, I go downstairs to find, like, the one package of them I know we still have. But I can't find it. I'm still waking up. No coffee yet. It's about 5:20am and I'm looking under couches and cursing because I know we only have one package left. Then my wife is thumping down the stairs quickly. She's calling out to me, and the way I remember it, I'm shouting back something how I'm still looking for the wipes. But that isn't what she's talking about. Not at all. Instead she's now on the main floor, and she's holding Tess in both arms, like a bunch of firewood, and she's yelling for me to call 911.
There have been two times before when we've found Tess in her bed and needed medical attention for her. Once was when we were on a trip to Acadia, staying with some friends who'd rented a house up there. Just before going to sleep, we checked on Tess and she wasn't breathing. One of those friends is an internist, a doctor, and so when it happened she and my wife managed to get Tess to come around. No suction, no ER. Just snapping her out of it somehow. We think Tess had aspirated, like gotten something in her airway and breathed it in, but whatever it was, it kinda cleared and she was fine. The other time, though, was much worse. By the time we got to her, again she had aspirated, but we needed an ambulance. She was rushed to Maine Medical Center in Portland, where they told us her oxygen levels were dangerously low. If we hadn't found her when she did, she woulda been a goner for sure. Was this just reflux, the gastrointestinal thing that Tess has, bringing food up and letting it get stuck in her throat? Or was it sleep apnea, another suspected problem in our girl? How could we prevent this in the future? What could we do to keep Tess safe?
These were all mysteries. The last time it happened was five years ago. The best we could do was keep a mobile suction unit handy, and check on her a lot. And honestly, these days, my wife and I--though we'd never say it out loud--had started to wonder, do we really need this bulky suction thing anymore? It's a pain to travel with it, to haul it wherever we go. And we literally haven't used it in years. And as for the checking on her, before we hit the hay and every so often in the middle of the night if we happen to be up, do we have to keep doing that? She's out of the woods, right? Nothing to worry about. She's so much older and stronger now than she was at three.
Well, we were wrong.
There, on the floor, is 8-year-old Tess. She's soaked, her hair as wet as if she's just stepped out of the shower. Her eyes won't open. She's cold. And my wife is breaking out the suction unit to use on her.
I am dialing 911. It is an experience that transports you. It is like they say. You stand outside yourself and you watch your own finger dial nine and then one and then one, from your own house, for someone who lives with you. Like you see on TV, except this is real. And time slows down. I hear the beep of each individual number. There is space between each number. So much time between them that it's excruciating. After the nine and before the first one, I could read Anna Karenina cover to cover and still have time left over for some tuck pointing on my chimney. With the phone to my ear, I listen for the ringing, and I'm suddenly aware that my son is also awake now. He has come downstairs and is within view of all of this. He is days from turning twelve. He is generally a happy kid and doesn't have a lot of worries, but something like this happening to his sister is definitely one of them. It's safe to say that this is Dana's worst nightmare, playing out on this Friday morning before his eyes.
The 911 operator answers, and you know that feeling when you're on the phone with someone and you know they're talking, but maybe have the phone cradled on their shoulder, and their mouth is far away from it, and you can barely hear anything they say? It sounds like this: 911 what is your address? It is entirely possible that the problem is me. That something is wrong with my mind that makes hearing possible. Or my hearing is just crap to begin with. So I ask the operator to speak up. He wants my address. He wants to know what is wrong. He has questions. I make myself be calm. I want only to hear him tell me that the ambulance is coming, but he wants all these things first. While Tess waits. While she possibly isn't drawing any breaths at all. I don't know her status. I can't get involved with that right now. The suction unit is on, I know that much. I can hear it. It's loud, like ten vacuum cleaners all at once.
I know that Dana is watching and listening to all of this as it unfolds. I know his mind is recording it all. On the phone with the 911 operator, I keep my voice even. I attempt to sound breezy, like this isn't life and death and instead we are just two guys, talking about the Red Sox game last night. The words don't sound real when I say them. My daughter is having trouble breathing. I say. Her airway might be compromised. I know every syllable I utter is being indelibly branded into Dana's consciousness forever.
The 911 operator tells me that the EMTs are on their way. And he says he's going to stay on the line with me until they arrive. Time is still behaving strangely. The line is silent. So I tell him as much as I can about Tess, about USP7 and how rare her disease is. I give him as much info as possible. I tell him about what happened five years ago. How five years ago when the ambulance arrived, inside of it they put Tess, but my wife was the one doing the suction on her in there, not the EMTs. Why would that be?, I ask him. He doesn't know.
I am telling Dana that Tess will be ok. I tell him this, even though I don't know whether it's true. He is quiet. The suction has been on for what feels like an eternity. How much does my wife need to clear from Tess?
The 911 operator tells me the EMTs have arrived. I'm gonna have you hang up now, he says. I know now that it took them less than five minutes to get here. They were coming from about a mile away. But it has felt so much longer. I have finished the complete works of Tolstoy. Now there are five EMTs and a cop in our house. The sun is up. I grab a change of clothes for Tess from her room. Her bed is saturated with spit and what seem to be other fluids, as if she's poured a full pitcher of water over the mattress. But there are no chunks of food. Did this all begin with an episode of reflux? Hard to say.
They check her oxygen levels. For the moment there is no ambulance, just the paramedics. As slowly as time went on the phone, now it speeds up. They check Tess again. The ambulance arrives. The house clears out. We gather our things for the trip to the ER. And then, there's a time when I am sitting with Tess in my lap, still there in the house. Her breathing is ragged. For me this is panic-inducing. Each breath from her does not seem like it's going to be followed by another one. Time slows down again. I have decided I do not like this slo-mo to fast-forward back-and-forth behavior of time. Then they take Tess and put her in the ambulance.
Dana and I are alone. We plan to follow in our car. Just before we leave, I ask him: "Are you okay?" He says, "No, I'm not okay! What do you think?" A pretty reasonable response to an inane question, I suppose. I keep it light in the car. I try to tell him how normal it is to be freaked out by something like this. I want him to talk. I feel like it will help him.
As we arrive at the ER, we get a text from my wife that says: Tess is ok.
We find them in a room. Tess is in a hospital bed, fast asleep. We sit there. An hour goes by. Then another hour. We exchange theories about what happened. Still Tess sleeps. I finish the Sunday crossword. And we start to talk about seizures. The USP7 group as a whole has a lot of seizures. Epilepsy is one of the hallmarks of the disease. Until now, we've thought that Tess was an outlier. That she was one of the only ones not to have them. But they want to do an EEG and check for seizure activity. They think that this whole episode began with a seizure. That would explain all the saliva in her bed, and her incontinence during the night. It's hard to think about her, alone in the dark in there, possibly seizing for who knows how long while we slumbered away in the next room, completely unaware. Even now, with an EEG, no one can measure what that potential seizure looked like, how severe it was.
Tess sleeps the day away, there in the ER. Verrrry unusual for her. She never does this. Even though she'll still take the occasional nap, they never last from 6:30am until just before 4pm. Over the course of that day, we try a number of times to wake her, but no go. There is talk of admitting her to the hospital, so she'll stay overnight. Dana is glued to his phone, on the hospital wi-fi. We allow this, with no limits. We get him talking, though. Once we know that Tess is ok, he cheers up.
The adrenaline rush of the morning wears off. My brother-in-law brings us coffee and food, thus saving our bacon in a huge way. Tess wakes up and is hungry. Feisty. Back to her old self. Walking around, making noises. Eating everything in sight. Like nothing happened. The pediatrics attending clears Tess to leave and go home, rather than admitting her. We are glad to head out. We're drained. On the ride home, which is literally 15 minutes, Dana falls asleep. I'm talking about the kind of deep nap where your head is back, your mouth open, catching flies. Arriving home, we have trouble waking him. He's out. We're grateful that Tess is going to be ok, but we can't quite relax about it. Our friends who we rent the ski condo with in the winter, they bring us dinner that night. We keep squeezing our T-Bird, holding her and hugging her. My wife and I take turns sleeping in Tess's room. We're up with her constantly, at one point bringing her downstairs for a three-hour stretch, probably because she just slept all day.