Remembering to always pack my son’s meds was a hard lesson to learn

If there is one thing I think I’m pretty good at, it’s packing for a trip. I’m pretty efficient about choosing what to bring, making sure my family and I have everything we need, and getting it all packed up in a timely manner.

But when it comes time to packing for my son Finley, who was born with Alagille syndrome, packing takes on an extra level of importance. For instance, I don’t want to forget to pack his Livmarli (maralixibat), which comes from one specialty pharmacy and would not be easy to replace. It treats Finley’s cholestatic pruritus, and not having it would affect my son’s quality of life.

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The day we forgot to remember

My wife, Dani, and I often double- and triple-check to make sure we have the bag with Finley’s medication when we get ready to travel. But one time, we did forget to bring his medication. And that time will always serve as my awful reminder of what not to do.

Finley Sandstrom settles in with his e-tablet as he prepares to depart for an airplane trip. (Photo by Jay Sandstrom)

We had been driving south through rush-hour Seattle traffic on our way toward the Oregon coast, and had been in the car for about an hour and a half, when I realized the bag with Finley’s medication didn’t get dropped into the box it was supposed to go into and remained behind on the counter at home.

I pulled over to search through our car, knowing deep in my heart that I knew exactly where the meds were, and that I was going to have to turn around and drive home to get them. It was about one of the worst moments I’ve ever felt, because I knew it meant subjecting everyone to more car time. There was no other way around it. We had to go back.

That happened about two years ago and, since then, Finley’s regular medications have never been left behind. On a recent vacation, I did forget to pack hydroxyzine, which Finley takes for itching only as needed, but he hasn’t taken it more than a couple of times in his life. I packed his bag like I was filling his medicine for the evening and next morning, like I do every night, and it got left behind.

This time, however, by the time I’d realized I’d left it behind, we were already on the plane that was getting ready to fly us all across the Pacific Ocean, so there was no turning around to retrieve Finley’s “extra itch medicine” as he calls it. Sometimes you need to learn lessons the hard way.

I’m glad that I’m the one that had to bear the brunt of the forgotten medicine, and not Finley. If he had to go without his medication, specifically the one that treats his itch, I’m not sure I would be able to forgive myself.

So now, each time we prepare to go away, I always check and check again that Finley’s medications are packed up to go, too, so Finley has what he needs to be comfortable and healthy.

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