All Alone in Our Own World

A story in nine parts

Photo by USGS

7.

“What’s your name and the patient’s name, sir?” one of the paramedics named Scott asks me.

“My first name is Lyle, spelled L-Y-L-E. Last name McKeany, spelled M-C-K-E-A-N-Y,” I say. “And my daughter’s name is Emily. Same last name. We mostly call her Em, though”

“Okay, thanks,” he says and pauses. “Wait, are you Owen McKeany’s brother?”

I almost forgot that we’re in Vegas where my brother has been a paramedic for well over a decade. I feel like I should be embarrassed, but instead, I find it amusing. Of course our crazy life has led us to collide with my brother’s world. 

“Yeah, I’m his older brother.”

“That’s so funny. I used to run calls with him sometimes. He’s an awesome guy. Small world, man.”

Yes, the world is small. It’s even smaller when you’re dealing with an acute medical issue in the same town where your brother knows just about everyone in the medical industry.

2.

A trip to the airport is stressful under normal circumstances. Add in a kid with special needs and the word stressful doesn’t feel strong enough.

It’s Sunday, September 22nd, 2019. My parents had their coffee brewing before the sun came up to make sure we got to the Las Vegas McCarran Airport a couple of hours before our 8:55 am flight.

My wife Allison, Em, and I are flying back to Oakland after spending three days here for my Dad’s 70th and my brother’s 39th birthdays—both of them on September 20th. A few months ago, I wouldn’t have dreamed of making a trip with Em this soon. She’s only 15 months old and her cerebral palsy disability makes it challenging to travel in the car, let alone an airplane. But it was important to me that we celebrate in person because time with my Dad is precious. He has advanced prostate cancer and there’s no guarantee he will be around for his next birthday.

Before the trip, we researched traveling with a disabled child, specifically one who’s tube-fed. We knew to keep all her medications and enough formula for the entire day in our carry-on luggage in case our checked bags were lost. We knew to keep an extra feeding tube, called a g-tube, on hand in the unlikely case that hers came out. And we knew to carry a doctor’s note with a list of her prescribed medications.

What we didn’t know is you can’t just take a baby on a plane without some form of ID.

The doctor’s note had her birthdate on it, but, after tearing apart the diaper bag, we couldn’t find it. Instead, I pulled out my phone and showed the agent in Oakland the first picture I ever took of Em since it has the date, time, and location of the hospital on it. But it also shows Em with an intubation tube in her mouth. It’s a picture I rarely look at because of the painful memories and emotions it brings up.

The agent paused, glanced at her colleagues to her right to make sure they weren’t watching, and printed off our boarding passes.

We ended up finding the doctor’s note crumpled in the bottom of the diaper bag later on. One more thing we needed to add to the to-do list when we landed—figure out a way to get Em some identification for the trip home.

Other than that hiccup, the trip here couldn’t have gone much better. Em even napped on the flight.

We feel like we’ve got this traveling-with-a-disabled-kid thing down pat already. I’m proud of us and excited about the possibility of traveling with Em more often—something that felt impossible for so many months.

3.

I’m in line to check our luggage for our return flight. We figured out the ID situation for Em, so there won’t be any issues at check-in this time.

Allison is sitting with Em and methodically pushing formula from a syringe into the g-tube in Em’s belly. She can’t push too fast or Em will get reflux, which can cause her to feel like she needs to throw up. It also means that it takes about an hour to get through each four-ounce meal.

After a smooth check-in, I pick Em up, while carefully handling the syringe and tube attached to her, and lead us toward the security line.

I’m holding Em in my left arm because she is a very particular little girl. She hates being held in my right arm, or anyone’s right arm, for that matter. Every picture we have of someone holding her is in the exact same position tucked into the elbow bend of their left arm.

Because of her particularness, we’re pushing around a $5,000+ medical stroller with a custom form-fitting seat that is currently holding our carry-on luggage, instead of holding her. She still hasn’t gotten used to the seat and we don’t feel like pushing our luck in the middle of a busy airport.

We make our way down the hall towards the C gates. I scan the television screens for our departing flight, Southwest 4394. It’s still on time for 8:55 am. Boarding starts at 8:25 am and it’s only 7:20 am now. That gives us plenty of time to finish her meal before going through security, so I keep feeding her while we walk.

We have TSA precheck, but there’s hardly any line this early on a Sunday. And before we know it, we’re next up to show our boarding passes and IDs to the TSA agent.

I give Em the last of her meal and then reach under her t-shirt with my free (right) hand to detach the empty syringe from her g-tube.

Em suddenly flinches and jerks to her side. Something’s wrong.

I look down and see that her entire g-tube is still attached to the syringe—the same syringe that’s now several feet from her body. The part that’s supposed to be in her stomach, is now in my hand.

You’ve got to be kidding me. Not now.

1.

Em had g-tube surgery when she was just four months old.

We call it her first piercing.

The g-tube looks like a mushroom. The “cap” fits on the outside of her stomach where we attach the syringe for her meals and the “stem” fits through a hole to the left of her belly button that reaches into her stomach. And a small balloon around the stem is filled with water to keep it all anchored in place.

In the months leading up to the surgery, we were still trying to feed her by mouth—still holding out hope that her injured brain could make new connections and figure out how to swallow more effectively. But instead, she had started projectile vomiting nearly every time we tried. We were desperate to get her (and us) some relief, so we opted to do the surgery.

This isn’t the first time her g-tube has come out.

It’s the third time—a track record we’re less than thrilled about. The first two times happened at home and we were able to get it back in with no issues.

Her surgeon told us that the hole in her stomach can close within an hour during the first couple of months after surgery. Even though she’s well beyond that window now, it crosses my mind each time her tube comes out.

4.

“Ouch!” I yell as I cut myself on the side of the cardboard box containing the new g-tube. I struggle to open it one-handed. Allison grabs it from me while I rummage around in the diaper bag for something to cover up the cut. The only thing I can find is a wet baby wipe, which will do nothing to stop the bleeding, but it will keep blood from dripping all over the ugly airport carpet.

Allison tucks her hair behind her ears, leans over Em, and says, “We’re going to help put the tube back in your belly, okay?”

What a cool story it would be if we change out Em’s feeding tube in the airport security area. We thought we were badass travelers on the way here, but this would take it to the next level.

But there’s a problem. It’s not going back in.

Damn it.

I put more lubricant on it and push harder.

Em flexes her stomach and her eyes get wide. I can tell it’s hurting her. It seems like the hole is smaller than it usually is. It looks red and irritated.

I take a deep breath and try it again.

Now Em is crying out in pain. It must feel like I’m stabbing her. I wish I could stop. I don’t want to hurt her. But we have to get it in there. It’s the only way she can eat. It doesn’t help that my finger is still bleeding. I’m trying to simultaneously hold the wet baby wipe on my cut and push in the g-tube.

I cannot believe this is happening right now.

We’re oblivious to anyone who might be watching. No one is jumping in to help us either. Maybe they think we’re changing her diaper. Something normal. This is everything but normal. Or maybe they’re oblivious too. They’re all trying to get through the annoyance that is the TSA security theater and get on with their trip—hopeful that they’ll be able to tell their loved ones the elusive “I just breezed through security” story.

We’re in a very public place, but we feel all alone in our own world.

5.

As I wash my hands in the airport restroom, I glance up at the mirror, give myself a slight smile, and shake my head. I’m not sure if I want to laugh or cry.

Allison and Em are waiting outside. Our flight isn’t delayed or canceled, but it’s not looking like we’ll be on it.

As I dry my hands, I see a father walk into the restroom with his son who looks to be about two years old. It’s hard to imagine what Em will be like when she’s two. The father is irritated because his son isn’t cooperating. The boy is fixated on touching the countertops instead of walking straight back to the stall. It’s a mundane moment in this father’s life, one he likely won’t remember.

Meanwhile, 20 minutes ago, I laid my daughter down on the floor at the back of the zig-zagging TSA security line and tried to put her feeding tube back in. Anything but a mundane moment. Now we’re waiting for the paramedics to arrive so they can hopefully help us get it back in.

I daydream, wishing it could be like in the movies:

An announcement blares over the P.A. system, “Is there a doctor in the building?” And then some strapping, George Clooney-looking doctor would hear it as he’s handing his boarding pass to the gate agent.

He would turn and look up at the speaker on the ceiling, then turn and nervously smile at the agent. All he would have to do is pretend he didn’t hear the announcement and he could be on his way home to his family. But he wouldn’t be able to live with himself if he didn’t do something—after all, it’s his duty to be the hero. He would abandon his plans and rush to the scene.

At first, he would struggle to put in Em’s g-tube. But, just as we give up hope, he succeeds. Our Savior. The crowd that had formed around us would erupt into applause.

But wait, look at the time. We’ll miss our flight if we don't hurry. Our hero would pick up Em and we would all run to our gate and narrowly make our flight. He would place Em into my left arm and give me a firm pat on the shoulder. And I would stop as I enter the jetway, slowly turn around, and give him a respectful nod.

But we’re not in a movie.

I look back to the frustrated father. To me, his son is amazing. He’s walking and touching and talking—all things Em can’t do and might never do. It’s incredible how fast children figure out how to do all these things; things most parents take for granted. There are their kids’ first steps and first words, of course. I’m sure those are exciting. But eventually, they become normal and occasionally even annoying.

I would give anything to be an annoyed father chasing Em while listening to her babble on and on.

6.

The breastfeeding booth is tucked into a secluded corner down an empty hallway. It’s a small pod with the words “Lactation Booth” written on a sign on the door. It has all-white, glossy plastic seating and countertops. It looks brand new and hardly used.

Allison lays Em down on the counter.

I exhale and say, “Okay, let’s do this.”

While I was using the restroom, Em had a giant blowout poop. It’s everywhere. And it stinks. It’s a good thing we packed a backup outfit for her.

Em thinks it’s hilarious. It is hilarious. I mean, when you’ve got to go, you’ve got to go—even when there’s a medical emergency going on.

We strip her down, go through a ridiculous amount of wipes, put on a new diaper, and get her other pants on. We leave her shirt off since we’re about to try to get the g-tube in again. We still have time to pull this off and make our flight, with a great story to go along with it.

“Okay, Emily, let’s try this again,” I say.

I try to push the g-tube in again. Em tenses up and starts crying almost immediately this time. It’s still not going in.

I push harder.

It feels so close, but the harder I push, the more she cries.

The stem of the g-tube is bending, making it impossible to keep it steady enough for long enough to get it all the way in. If there was a way to stick something more rigid through the stem, I feel like I could get it in.

I open the door of the pod and see that three paramedics have arrived. It seems unbelievable that they’re even necessary, but it’s the proper protocol. They’ve brought a gurney and some supplies in what looks like a red fishing tackle box.

“Hey guys, do you happen to have something sturdy that would fit through this?” I ask as I show them Em’s g-tube.

One of them opens the tackle box and finds a piece of wire and hands it to me. I feed it through the g-tube. And brace myself for round three.

I lubricate the stem of the g-tube. Again. I push it into the opening on her stomach. Again.

And it’s not going in.

Again.

I keep pushing and Em’s crying even louder this time. She’s terrified. And now there’s blood oozing out of her stomach.

I stop. I can’t keep hurting her like this.

8.

The paramedics prop the back of the gurney up so I can sit upright and hold Em in—you guessed it—my left arm.

As they roll us down the hall, I don’t bother looking at the other travelers. But I’m certain they’re looking at us. Instead, I’m focused on making this feel like a fun new ride for Em. She has already ridden in both a helicopter and an ambulance in her short life, but this is the first time I’ll be able to ride along with her.

Scott and one of the other paramedics are in the back of the ambulance with Em and me while Allison sits upfront with the driver. Scott asks me the typical patient intake questions as his partner takes Em’s vitals. I tell them about the g-tube coming out and the cut on my hand and the massive poop and trying to get the g-tube back in three different times.

I look at my watch. It’s 8:35 am. We should be boarding our flight now. A lot has gone down in the past hour and a half.

The conversation shifts to my brother and how we’re in town for his and our Dad’s birthday. Scott knows about our Dad’s cancer and asks how he’s doing. I thank him for asking and tell him he’s hanging in there and how the treatment he’s getting seems to be staving off the worst of it. For now.

I’m thankful for the sheer normalness of the conversation. I never thought an ambulance ride with my daughter would be such a welcome respite.

9.

It’s Saturday, November 12th, 2022—over three years later.

As I reach down to hook up Em’s syringe, my Apple Watch buzzes on my wrist. It’s a reminder to change out her g-tube. We swap it out for a new one every three months. Unless it comes out in the meantime, that is.

And it has come out plenty of other times.

Sometimes we’ve pulled her out of her chair while the syringe is still attached and it yanks it out of her belly. Sometimes the balloon inside her belly pops and it just sort of falls out.

I pick her up and take her to her room. Allison helps me get the supplies set up: the new g-tube, the lubrication, a syringe with water to fill the balloon, an empty syringe to test that it’s placed correctly. We recently started getting her replacement g-tubes from a new supplier. I notice that it comes with a handy plastic thing to feed through the stem to make it more rigid.

My mind flashes back to our experience at the Vegas airport. The helpless feeling I had as I kept trying and failing to get her tube back in. The blood coming out of Em’s belly. The paramedics who knew my brother. The emergency room not having the right-sized g-tube. The doctor putting in a foley catheter instead to keep the hole in Em’s belly open. Having to stay another night in Vegas because Southwest didn’t have any more flights by the time we got discharged. Visiting the surgeon in San Francisco a few days later and being nervous that they’d have to put Em under the knife to place her g-tube properly again. The relief I felt when it finally went back in.

It feels like forever ago. Almost like it happened to someone else. We’ve come a long way since then.

I stick the plastic piece into the g-tube, add some lubrication to the stem, and get ready to place it in Em’s belly.

It slides in without any issue.

And Em giggles.

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Thank you to Rishi Dhanaraj, Monica Ek, Sabrina Dorronsoro, Sasha Levage, and Rand Leeb-du Toit for their help with editing a very early draft of this story way back in March 2021.

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