IN THE ICU

Jacob started his day early. He woke us up around 5 am. He was seizing and had a fever. It was the same type of seizure he had a week ago, rhytmic movements throughout the body. After giving him valium, the ambulance arrived. We spent the morning in the trauma unit of the ER. The first seizure lasted about an hour, and then he had ongoing seizures for hours. I would say for at least 4 hours. The time is kind of blurr. He got hooked up to an EEG around 9 am, and they also did a spinal tap in addition to the regular blood work. They were concerned that he had cephilitis, which is an infection of the brain. We now know he doesn't have that. Jacob does have a cold, so most likely that is the reason for the seizures this time.

It is now afternoon close to 3 pm. We're in the ICU (intensive care unit), and Jacob will be hooked up to the EEG until tomorrow morning. He is very lethargic and tired. He is so pumped up with medications, so it is to be expected. He is opening his heavy eye lids from time to time and looks at us. No smiles yet, and he doesn't respond to his name. Sarah lays next to him in bed, and he reaches out for her hair once in a while.

It is definitely different to be in the ICU. No food allowed in the room. No bathroom in the room. We need to wear gowns in the room, and gloves if we touch Jacob.

We're hoping we won't see any more seizures today, and that Jacob can get some good quality rest. Tomorrow is a new day.

We also met with neurology yesterday, since his movements have worsen a lot this past week. He couldn't even hold his head up. He is now back on a medication we just weaned him off of. We also found out that Jacob doesn't have a neurotransmitter disorder. It is a disappointment for sure. Instead the lactate acid was elevated in the spinal fluid, so if anything it points to a mitochondrial disorder again.

We also did a feeding evaluation yesterday, and Jacob is not to have anything by mouth for now. When spring/ summer comes around and if he is doing better, we'll redo the feeding evaluation.

We're all kind of exhausted from the drama today, but happy that Jacob is at least out of the seizures as of now.

Send your thoughts our way. - Maria.