Sunday, March 8, 2009


Jacob got out of the ICU this afternoon, and is now on his regular (8th) floor. He hasn't had any more seizures today, but extreme movements. They intrigued neurology to the point that the main attendant will include Jacob in the book he will release next year. The interesting thing is that the movements look exactly like seizures, but they're not. This is good in itself, but can be very frustrating since noone knows how to treat them. The oculogyric crises were also back today. Jacob rolls his eyes back and you can't reach contact with him.

The attendant neurologist also declared that Jacob has had status epilepticus 2 week-ends in a row. This is when a seizure lasts for more than 30 minutes. This is considered a medical emergency, and we now have new guidelines for when we have to call 911. If any seizure lasts more than 3 minutes, he needs to be brought in by ambulance right away due to the risk of brain damage, organ failure or even death. We will have to make sure that everyone who has Jacob in his care is aware of how quickly he needs to be brought into the hospital if he has epilepsy.

Tonight, Jacob is resting in his bed. He's moving, but I see more of his regular "irregular" movements. He is more tired than usual, but I start to see smiles and we have had a few conversations.

I am not sure how much more they can do for him this time around. We'll see if they want to do further tests tomorrow or simply let us go home. I am hoping for the last option.

Hoping for a brighter week! - Maria.

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