Over the last few months I have found myself saying this phrase more and more in conversations I have with people regarding Ella.

It doesn’t take long for the seizures to escalate. It doesn’t take long to know if something is off. It doesn’t take long for EMS to arrive. It doesn’t take long to fly Ella to the hospital. It doesn’t take long for a seizure to stop. It doesn’t take long for another one to begin.

Truth is, taking a long time for most of those above mentioned things would mean a completely different outcome for Ella, and for us. Those three words are a critical part of her care.

Ella had a great Saturday. We celebrated HER. Her army showed up. She was spoiled and she got more presents than she ever has. Friends and family came together to see her, to love her, and to show her just how much she means to them. Saturday was perfect. The kind of perfect everyone deserves on their birthday.

Sunday was the opposite. Ella woke up funky. She struggled all day. The smiles from the day before were not so forthcoming and she was tired. I am sure she was partially recovering from her birthday, but this was a different kind of fatigue. The kind of fatigue that put a pit in our stomachs. Steve and I both knew what was about to go down but hoped if we didn’t speak it into existence, it miraculously would not happen.

Seizure one came at 8:02 pm. I don’t know how long it lasted because I walked in while she was having it. Seizure two came at midnight, lasting over a minute. Seizures three, four, and five came between 1 and 2 am. I had been sitting with the nurse monitoring and giving oxygen as needed while Steve caught up on some sleep. Once they kept coming, I knew I needed to wake him up.

Rescue meds were administered, we reached out to the on call neurologist, and an extra dose of meds was given. Ella stopped seizing around 4 am and passed out for the rest of the morning. Steve stayed with her because I had already been up all night. Had those interventions not worked, we would have been on our way to the hospital.

Monday was a recovery day and today Ella went back to school. Medication adjustments were made and while she is having some side effects, overall she had a great day. We are continuing to watch her like a hawk and take shifts during those gaps when nursing can’t be covered.

You know what else doesn’t take long? Snapping back into reality. This is what life with Ella may look like for the unforeseeable future, and we must continue to keep our guard up.

Epilepsy sucks and so does everything that comes with it. It definitely doesn’t take long to realize that either.

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