Sarah Stultz: Sometimes it’s OK to take one day at a time

Published 9:46 pm Monday, July 10, 2017

Nose for News, By Sarah Stultz

The last week for our family has been an emotional roller coaster. When you’re riding roller coasters, at some points you go high and then very quickly dip down low. Other times you simply coast along.

Early in the morning on July 2, we were alerted to our 5-year-old son, Landon, who was having a seizure in his sleep. Landon unfortunately — or fortunately — has gotten into the habit of sleeping in our bed, and right before 5 a.m. I noticed he was seizing. Landon has dealt with seizures most of his life, so while it was startling, we at least knew how to respond to it. The seizure stopped in less than three minutes and it appeared he went back to sleep. About an hour and 40 minutes later, I was awakened again to him having another seizure. Like the previous seizure, he ultimately came out of it and then appeared to be sleeping peacefully before any emergency intervention was needed.

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He slept for most of the morning, though there were a few times he woke up and seemed to be semi-alert and understanding of what was going on around him, though he was definitely not his normal self.

Shortly after 1 p.m., he started seizing again. My husband and I gave him two doses of his emergency medication under the direction of the doctors at the Minnesota Epilepsy Group. After the seizure still did not stop, we called 911, and the paramedics and other emergency personnel  came to our home and then transported him by ambulance to the hospital.

The whole time this was happening, my mind was flashing back to exactly one year before when we raced to the hospital after finding out that our 8-year-old daughter, Sophie, had been in a crash while riding her bicycle.

Landon was taken to the same room in the emergency room where Sophie had her last breaths, and I could not help but question in my mind, “Why? Of all days, why was this happening on that day, and was I going to lose a second child on the same day in that same room?”

When all was said and done, Landon’s seizure episode lasted about an hour and took at least four different medications to bring him out of it. Landon was flown by helicopter to Rochester, where we spent the next two nights before he was released on the Fourth of July with increased daily and emergency medication doses on hand. It was a rough couple days in the hospital, but Landon was acting mostly like his normal self by the time we were released.

I would like to say that things have been back to normal since then, but unfortunately Landon had another seizure episode this past Saturday, when we landed back in the emergency room.

It’s challenging having a child with epilepsy. Not knowing when the seizures will strike can make a parent feel like you’re on edge 24/7. I’ve felt like I’ve been sleeping with one eye open — so to speak — because I’m afraid I might miss something. I’m afraid  if I turn my back, it might be too late.

We are working with Landon’s doctor through the Minnesota Epilepsy Group to transition to a new medication after these episodes in the last week and also plan to look into the ketogenic diet as well. While this diet does not necessarily work for everyone, we are hopeful it will for Landon.

Thank you to all those people who have had us in your thoughts and prayers this week. It has not been easy, but we have found comfort in all of the prayers.

While I’m still trying to figure out the lessons to be learned from these experiences, I am learning again that sometimes you just have to move forward with a prayer in your heart one day at a time. And that is OK.

Sarah Stultz is the managing editor of the Tribune. Her column appears every Tuesday.