We've had a lot of friends/family asking about Trevy.
Since September we have noticed a significant spike in Trevor's seizures. Also, he has been having episodes (17 to date) that involve loss of balance and vomiting. It has become increasingly clear that these events are neurological. He's either experiencing intermittent pressure on his brain (a side effect of his surgery) or has an emerging seizure type.
The last night of our Disney vacation was ending perfectly. We were all packed and ready to head home bright and early the next morning. We decided to skip parks and just relaxed and let the kids play in the pool (their very favorite thing to do). Trevor even got a special gift from the life guard who noticed his passion for swimming! It was a perfect ending.
Around 8pm Trevor had a very severe episode which scared Jonathan, a friend and myself to the point that we called rescue to come. I am not the kind of mom that freaks out easily. In fact, when Trevor's throat was swollen almost shut with mono...I took him to the pediatrician who then sent us by ambulance to the hospital! The fact that we called rescue means that this episode really shook us up. It was very scary for us...especially the kids. He couldn't walk, his eyes were bulging and he was non-responsive for longer than we've ever witnessed. Not to sound too dramatic (and I'll probably roll my eyes at myself someday) but at the time I literally thought he was going to die.
I was so proud and thankful for Jonathan. He held it together until we were alone in a room with Trevy sleeping. Then we cried together. Jonathan is not a sappy guy. That’s usually my role in our relationship. Seeing his shoulders shake with emotion is almost too much for my heart to bear. It was definitely what I call "a groaning moment". When every fiber of our being is groaning for the Day of Redemption. When seizures are history. And there are no more scary moments or Children's Hospitals.
After the event passed, Trevor remained stable and the hospital released us around 1am with the promise that we would follow up as soon as we were home. They wanted to admit us but I can be fairly persuasive and convinced them we had it under control now. Although leaving bright and early was out the window! I can't say enough wonderful things about Disney staff. They were responsive and caring and transported us there at no cost and paid our cab fare back to the resort too!
Since being home we have been in contact with his neuro team both locally and in Detroit. There are more tests lined up and they are working closely with us to try and figure out exactly what is going on so that we can treat it appropriately. His neurologist does believe it's a new seizure type emerging. Although pressure is not off the table. The plan right now is to adjust his meds. If that doesn't help we will trial a new medication. We haven't thought beyond that point.
In between the episodes, Trevor is happy and himself. Now if only the rest of us could recover! We're all still quite jumpy every time he seems off.