A SUNDAY TAKING AN UNEXPECTED TURN

I woke up this morning thinking that we didn't really have a plan for today. It was a good feeling to wake up on this beautiful fall day. The air was chilly, but the sky was clear blue. The sun was warming against the skin. I decided that Jacob and I would go for a walk.

We had a great Sunday. Joakim and I were working in the yard. We planted some new bushes in the front yard. I got rid of my vegetable garden for the season. Sarah was carving a pumpkin. Jacob took a long nap. My plan was still to go for a walk with Jacob when he woke up from his nap.

The walk never happened. Jacob started seizing instead. He has had a few more seizures in the last week, but I was sure with a dose of Keppra that we would be able to continue with our day. We executed Jacob's whole seizure action plan, the last step being calling 911.

Since he was still seizing when the ambulance crew came, they gave him Versed before we left. Jacob tried so hard to get out of the seizure in the ambulance, but he never got fully out of it.

When we finally arrived in the ED, he had been seizing for close to 2 hours. When the doctor started talking about intubating Jacob and giving him a Versed drip (continuous seizure medication through an IV), I knew it was time to get Dr. C. involved. I texted her, and within seconds, she was calling me. I can't say enough wonderful things about her, and how she never hesitates to get involved. She quickly came up with a plan with the attending doctor, and literally within minutes of receiving Phenobarbital, Jacob's seizure stopped. I simply love Dr. C.

The two hours of seizing was bringing back many emotional memories of Jacob's uncontrolled seizures. We have been here before. It has just been a very long time, almost two years. It always seems to happen around Halloween. It scares me to death when Jacob seizes and there is absolutely no reason why he would seize. He has no infection in his body or any indicators that his body is fighting anything. He is just seizing - long and hard. Tonight, I can't even wrap my head around what brain damage might have happened from all that seizing tonight. And I am scared that he will be intubated, that he will need medications where he won't be able to breathe on his own. Jacob is not a kid you want to intubate. The risk of not getting him to breathe on his own again is just very high. This is my darkest place with Jacob when we're stuck in seizure land with no rhyme or reason.

Jacob went into status once again tonight. With the help of his evening seizure medications, he is now sleeping, not seizing. Please send positive thoughts, strenghts, and prayers to our lovely Jacob.

Love, Maria.