A road trip with my daughter

of sorts

Apr 01, 2023

On the Golden Gate Bridge, the downpour was so intense I couldn’t see the lane markings. The wipers didn’t help as they kept leaving an annoying smudgy streak right in my line of sight, not that they could keep up with the torrent of water dumping on them anyway. I’ve driven over the bridge countless times so I knew the gist of where the lanes were enough to not get us into an accident.

My four-year-old daughter Em let loose a chunky cough and I moved the rearview mirror slightly so I could see her. She cried out, clearly over the coughing—or junkiness, as we call it—which had been lingering for the better part of three weeks.

“It’s okay, Em,” I say as I glance down at Google Maps on my phone. “We’ll be there in 15 minutes, okay?”

“There” was not some glamorous hotel in San Francisco. It wasn’t an Airbnb spot with a view of the bay. Nope, it was the pediatric unit at California Pacific Medical Center (CPMC).

Much like the road trip we were supposed to go on together a couple of weeks ago, this trip this past Thursday had also been planned for months, because she needed an overnight follow-up electroencephalogram (EEG) test—the sixth one of her short life, if I’m counting correctly.

Em has a rare form of epilepsy called electrical status epilepticus during slow-wave sleep, a.k.a ESES (pronounced e-sis). There’s no way to know that anything is amiss when she’s sleeping—she mostly looks insanely cute and peaceful. But past EEG tests have repeatedly shown that underneath her cute pixie cut, her brain is firing off slight blips of electrical activity, about once every second, when it should be resting. The strangest part is that she usually sleeps great. Usually.

As we pulled into the handicapped parking spot near the elevators, our headlights flashed across the face of a janitor sitting on a folding chair next to a rolling trash can. He had clearly been dozing off and the lights woke him up. I got out of the car, stretched, and started thinking about how I was going to get all of our bags up to Em’s hospital room without needing to make a second trip to the car. Her diaper bag is a backpack, so that was easy. My computer bag would fit in the basket underneath her specialty stroller, along with her positional pillow. But there was also the smaller backpack with my change of clothes, a shoulder-strapped insulated bag with my Zevia drinks and some snacks, and another insulated bag with all of Em’s meds.

With her stroller set up and our bags staged in the hatchback trunk, I leaned in to get her out of her car seat.

And that’s when I smelled it.

Change of plans. I cleared out everything from the trunk and laid her in it to change the mess. All the while she was yelling. I looked over at the janitor, wondering if I should throw out the stinkiness into his trash can, when I saw he was somehow back asleep. The trash can by the elevators would have to do, although I figured it would probably end up in his trash can eventually anyway.

After the clean-up, I put her in her stroller and said, “Can you help daddy carry this?” as I placed her meds bag onto her lap. She can’t really grasp things due to her cerebral palsy, so I put her arms over the top of the bag and she seemed like she maybe even liked having a job to do. I strapped the diaper bag onto my back and grabbed the remaining bags in my left hand so I could steer the stroller with my right.

The trip up to the pediatric floor looked familiar. I had visited Em there before when my wife Allison had taken her for previous follow-up EEG tests. But this was the first time I was doing it on my own.

There are so many little things to keep on top of with Em. Before we left home, Allison had printed out a helpful list of meds and Em’s daily feeding/meds schedule, all of which are given to her via a feeding tube in her belly called a g-tube. Em’s nurse loved how prepared we were. She took the list and immediately started entering everything into their computer system. But still, mistakes can happen, which means we always need to double-check everything they do, just in case. During this visit, I nearly gave Em 1/8th of her normal dose of a drug called glycopyrrolate, a med that reduces the amount of saliva she produces—kind of an important one when she was still dealing with increased saliva after being sick recently.

The first hour or so was filled with a bunch of visitors. CPMC is directly across the street from Stanford Children’s Health where Em’s team of neurologists—yes, plural—and other specialists see outpatients, so it’s easy for them to pop over and say hi to us. Nearly every woman commented on how jealous they were of Em’s long eyelashes.

A couple of hours later, the EEG tech showed up. Over the next hour or so, he methodically placed conductive gel and electrodes all over Em’s head as she watched one of her favorite Sesame Street episodes on her iPad. I helped him by holding up Em’s head while he wrapped gauze around it to keep the electrodes in place throughout the night. The bright white gauze circled around up to the top of her head where they covered the mess of wires sticking straight out of the top of her head—making her look sort of like a Teletubby character. The wires were connected to a computer where the monitor showed the various waveforms from each electrode, like 10 simultaneous lie detector tests being tracked on the screen at once.

And then, we just sort of hung out until Em went to sleep.

The CPMC location on Van Ness Ave in San Francisco opened in 2019 and four years later it still feels new. It’s not quite like staying at a hotel. But it’s not quite like staying at a hospital either. If that makes sense. Em’s room had a private bathroom with a shower and a chair that unfolded into a small bed, which wasn’t all that comfortable—or long enough for my 6’1’’ frame—but way nicer than what many other hospitals provide.

Em was asleep and I had already unfolded my bed when Em’s nightshift nurse came in to check on us.

“I’ve never seen someone make the chair into a couch like that before,” she said.

I was confused and explained how I unfolded it and how there didn’t seem to be any other way to move it. She insisted that it could be somehow arranged into more of a proper bed. Another nurse came in with some sheets and a blanket for me. Then they worked together to refold the “couch” into a chair and attempted to re-unfold it a different way into a “bed”. But it turned out that the “couch” I had made was, in fact, the “bed” all along. This would’ve been funny—I mean, it is funny now—if all the unfolding/folding/re-unfolding of the chair/couch/bed didn’t wake up Em. But it did.

My heart sank. Because when Em wakes up, especially when she’s in an unfamiliar place and still getting over being sick, it can take her an hour or more to get back to sleep. I was looking forward to vegging out on my couch/bed and watching an episode of Slow Horses on my laptop. But instead, I kept having to pop up to wipe the saliva from Em’s mouth and put her head in a more neutral position, without screwing up the electrodes.

She woke up one other time later on and she still, somehow, was awake again at six-something in the morning. I kicked myself for not packing her sound machine—not realizing, until Allison mentioned it at home later, that they have sound machines at the hospital. Because of course they do—especially in the pediatric unit.

Both of us were dragging in the morning as we waited for the neurologist to make her rounds and deliver the EEG results. I ate some mediocre turkey bacon and some not-half-bad whole-wheat pancakes while Em listened to her music.

Her gauze cap was drifting off the top of her head by then, so I decided to grab all the wires hanging off her and move her out of the bed and into her stroller for a while. Only a few minutes later, the neurologist and physician’s assistant walked into the room.

Normally, I might’ve been somewhat anxious to receive test results for Em. Yet I was confident that the test would look basically the same as the last one. If anything had changed, it would likely be a pleasant surprise, rather than bad news. As expected, the results were the same. It meant that we’d continue with the long-term plan we had already discussed to taper down some of her meds. And it meant that we would be discharged in time to beat commute traffic.

A nurse came in and offered to clean the conductive gel out of Em’s hair. When it dried, it looked like her hair was styled with the most expensive hair gel ever.

We got the discharge paperwork and I set her up in her stroller with the meds bag back on her lap. The sun was shining as we drove over the Golden Gate Bridge this time and she was mostly quiet on the hour-long drive back to Sonoma—listening along to a podcast episode with me while watching the road. When we got home, Allison had a meal ready to go for Em. And when that was finished, Em fell asleep for a nap within five minutes of laying her down in her bed.

Lately, I’ve been doing more of the day-to-day caretaking with Em than I ever have before—a topic I’ll be writing about soon. While this wasn’t the most thrilling road trip ever, it was a big deal for me to take her overnight like that on my own. The trip gave me a new perspective on the challenges Allison had to navigate when taking Em multiple times in the past, like the time when I went to watch a movie at the theater by myself. It also gave me the confidence that I can not only be a good father—loving, listening, changing diapers, and whatnot. But I can be a good disability dad too.

Before I go, I wanted to let you know about a change I’ve made to the subscription plans here. Well, at least for one of them.

For anyone who signs up for the Founding Member level, I’m throwing in a free one-hour coaching session with me ($100 value). You can sign-up or upgrade to the Founding Member level here:

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Thanks to Russell Smith, who writes Solvitur Ambulando. He's a Founding Member already and I had the pleasure of meeting him in person during the Foster retreat in February. Russell, let’s do a coaching session soon! Although, he might not need one. Everyone should check out this deeply personal and vulnerable piece he wrote about living with a congenital heart defect he’s had since he was born: