Wednesday, March 26, 2014


Today is Purple Day. People all around the world wear purple in support of epilepsy awareness on March 26th. Jacob and I decided to wear purple to make the hospital staff aware of Epilepsy. Jacob got out of his hospital gown and was sporting his Children's dark purple shirt. I must say I don't own much purple, but I did get out one of my few purple shirts.

Jacob has intractable seizures. This means that his seizures have failed treatment. Despite Jacob being on four different seizure medications daily, he has subclinical seizures around the clock. We have had to come to a point where we only chase clinical seizures or Jacob would be medicated at all hours of the day. It is not an ideal place to be, but it is something we have had to accept. And we have accepted it. Life is too short to not focus on the positive things in life. We know a seizure can take Jacob's life any day, but in the mean time, we enjoy the good things in life, like a seizure free day.

This hospital stay has given us a reminder of Jacob's clinical seizures, and how easily Jacob goes into status epilepticus. Status epilepticus occurs when a seizure lasts too long or when seizures occur close together and the person doesn't recover between seizures. It is a life-threatening condition in which the brain is in a state of persistent seizure. Some people say you are in status after 5 minutes, some say 30 minutes. Jacob's crew goes with 30 minutes.

In this last week, Jacob has been in status three times. It is not easy to break status epilepticus in Jacob, and often he needs multiple rescue medications to break his seizures. A lot of times, Jacob is breathing normally and his vitals are stable during his seizures, but on Friday he wasn't able to hold his oxygen and really struggled to breathe. His body endured septic shock. I was scared for Jacob's life.

Yesterday I got to hang out with the attending doctor in the PICU. He has taken care of Jacob from the time he was a resident to fellow to attending. We started chatting about Jacob, and all the different times he has taken care of our son. He reminded me of Jacob's uncontrollable seizures five years ago, and when we had to put Jacob in a medicine induced coma to stop his status epilepticus. The medicine induced coma entails shutting Jacob's brain off and restarting it to break his seizures. Jacob was in status epilepticus for 11 days or 15,840 minutes, since most seizures are counted in minutes. Unfortunately the medicine induced coma didn't fully stop Jacob's seizures, and Jacob has today lived with the diagnosis "intractable seizures" for five years.

Photo: Sporting our Purple for Epilepsy Awareness Day!

The first time Jacob went into a seizure at age one, I was devastated. I felt as if my life had come to an end. It still aches my heart every time Jacob has a seizure. I am always afraid that we will not be able to stop his seizures. I always tell Sarah we don't use the word "hate" in our house, but for seizures I do use the word hate. Dislike is just not strong enough.

I am hoping one day that there will be that one magic medication for Jacob's seizures. In the mean time, we are just going to enjoy every seizure free moment we can.

And our little warrior is doing so much better today! It is even talk of going home tomorrow...cross your fingers.

Put on your purple PJ, and go to bed!

Love, Maria.

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