Jake's Journey

To those following Jake’s latest adventure.

First - We are home and Jake is feeling nearly 100% better.

He had multiple seizures Monday Morning between 4:30 and 11am

Prior to Monday he had no history of seizures and no major precipitating factors.

I went into his room to rouse him for breakfast and found him face down in a puddle of bodily fluids, non responsive. He was breathing and making eye contact but no words.

A quick 911 call later his chariot arrived to take him to the local ER. He was stabilized and observed there until a room could be confirmed for him at Doernbecher’s Children’s Hospital in Portland, then he went for a second ambulance ride to see the pro’s.

Everyone at Doernbecher is fantastic, every time. I’m so happy to have them as our “home” hospital.

After an EEG, an EKG, A slew of IV meds and blood draws - we were still unable to uncover what had caused the seizures. Apparently they are likely a result of his prematurity and the brain bleeds that caused his CP and Hydrocephalus. As he grows and develops, as his brain changes/matures, seizures are an inherent risk because of his prior brain injury.

He is now on a twice daily anti-seizure medication and we have rescue meds on hand just in case a big one breaks through.

Seizures will most certainly happen again, and will continue throughout his life, but having the right tools and knowledge on how to react will be key.

I’m looking for resources on getting him a trained service dog. If you have any leads, let me know!

Life with you is a roller coaster kid, we’ve got this.

Jake got to ride in an ambulance today, hes been having seizures all morning. We’ve never dealt with seizures before.

I’m completely out of my realm of knowledge.

I’ll update when I know anything.