Its been three weeks since Eli’s second laser ablation surgery. The doctors were pleased about how the surgery went, feeling optimistic that they were able to ablate the entire hamartoma. He was more sluggish and tired than after the last surgery but seemed to be doing well. No major swelling like last time. The steroids made him crave carbs and he must have eaten several pounds of “buttery noodles” in a two week span! So, he mainly rested, watched movies, and took short trips to the Children’s Museum of Houston.
When we arrived back home in Baltimore things were going smoothly. But four days later, Eli had seven major seizures. They were considered tonic-clonic seizures (grand mal seizures). These were new to him and very scary. He ended up in ICU that night. He stayed in the hospital for over 24 hours as they gave him an EEG (which looked good) and monitored him. His language skills slowed considerably and his motor skills were off. The motor skills were just about cleared up by the next day, but his verbal skills seem to still be a bit slow, more than a week after this incident.
It is very tough when you go to your local hospital and no one knows anything about HH. You get reactions from seasoned doctors like “I’ve never heard of gelastic seizures before,” to interns being fascinated by seeing some rare condition. And my neurologist is great, but he needs guidence regarding Eli’s care and the communication from the doctors in Texas was very poor. It leaves you feeling very alone.
But, Eli returned to preschool for two hours each day last week and loved it. He will be returning to his normal schedule there this week. His behaviors continue to be challenging and it is exhausting to handle. Our awesome parents, who have helped tremendously staying at our house over the last two weeks have now left. He is increasingly having myoclonic seizures throughout the day- today he had 14. Not sure how much this is affecting him or what to do about it. Eli went to tap class yesterday and pumpkin picking today. We just keep trying to keep things going. We are hoping to return to a sense of normalcy soon.
But we ask, what is our new normal?