Seizures

Since December, Logan has had episodes that seem to be temper tantrums. They began with less frequency and we thought were related to irritation from oral secretions. Since the start of them, they have increased in frequency and are more vigorous. 

Last week I sat on the couch holding Logan when he had an episode. He started thrashing and crying through his trach. His heart rate went high and his eyes rolled up and over to the right. It didn't last long, but afterward he was agitated and did not seem himself and then became tired. 

I am an ER nurse and have seen many seizures. This episode, did not look like a classic seizure but all the signs were there. I cried afterward and couldn't understand why. I finally realized how much the episode bothered me when I cried all the way to work. It felt like PTSD from Logan's big febrile seizure in 2012. It was not to the severity of that seizure but for some reason brought a lot of the feelings back. 

Before I left for work that day I called the neurologist office to tell them of my concerns. The nurse listened and said she would run it by Logan's neurologist. After I arrived to work they called with an appointment for a 12 hour overnight videotaped EEG. We scheduled it for the next day.

So I spent the night with Logan at the sleep center. Poor bubba was hooked to all sorts of wires. He had a very uneventful night. He had zero episodes until we were about to finish the study. The episode was very short and I felt very defeated. 

Today I received the results. A year ago, his EEG showed that he had tendencies for seizures in one part of his brain (the temporal lobe, which one, I can't remember). Today they said he now has these tendencies or can be at risk for seizures from both sides of the brain. They also noted that the one episode he had during the test was a seizure. 

So now we start by increasing his seizure medication dose in hopes it controls the seizures. We will watch closely and keep in touch with his neurologist. 

This information was very hard to hear and I'm doing my best to keep it together. Joel and I both agree that this was to be expected but that makes it no easier. To me it means we are closer to worse. I worry that his brain degeneration is progressing. It isn't fair that we can't fix it or slow the progression. He deserves a chance at life as much as anyone else. I am sad, mad, and scared for what the future holds. I don't want him to suffer from seizures. 

We could use some extra prayers and suppor right now. At least Ieast I could! Logan is doing really well otherwise. I am in Orlando for a conference an before I left I asked him if he wanted to go to Disney World and see Mickey. He looked me in the eye and with his talking valve on made a very purposeful noise. I think he wants to go! Maybe some day. I will keep you all posted on the new medication change. 

~Rachel