We've had some crazy, emotional days but we are back on our feet and things are for the most part back to normal. I know a lot of you know bit and pieces of what happened...so here is the whole story.
Kade's seizures started out of the blue, no fever or anything. Tuesday around noon I was running around with the kids running errands. Kade feel asleep in his carseat, and when I went to get him out at the post office he was in a really deep sleep (strange for him) and didn't wake up when I carried him inside to mail a letter. I remember thinking that was strange, and when I saw the line was long at the post office I just turned around with the kids and put them back in the car. When we got home 10 minutes later he was awake and acting normal. Although I thought his behavior had been unusual for him, I just chalked it up to him being really tired because it was almost naptime.
The next morning he woke up at his usual time, 6am. Cody got him a bowl of cereal, and he was eating it in his highchair. Cody was in a different room, and heard Kade making a weird noise. He went in the kitchen and saw Kade chewing with his mouth even though there wasn't anything in here, and making a weird noise. He called for me and I came running. We kept saying his name, but even though his eyes were open, Kade wouldn't look at us, his eyes were locked. I pulled him out of his chair and he went into another deep sleep. Cody ran upstairs and got Rhett and Ethan up, and we drove to the ER. By the time we arrived there he was awake and acting normal.
We were put in a room quickly, and after they did his blood pressure and checked his temperature Kade started throwing a fit. He screamed for at least 2 hours, probably 3. They said that was normal behavior after a seizure for a child. They had to draw blood twice, and tried to put in an IV but he pulled it out. My parents came to get Rhett and Ethan, and my Dad and Cody gave Kade a blessing. I wish I could say he stopped screaming after that, but no! Cody drove home to get Kade's blanket, and 5 minutes after I gave it to Kade he threw up on it (and me). After asking if they had washers or dryers (no) we decided to wash it in the sink with hand soap and then Cody took it out and layed it on the hood of his car to air dry. It worked...you do what you have to do when you are desperate!
They wanted to do a CAT scan, and were going to sedate Kade since he was freaking out so much. 15 minutes before the test, he fell asleep, and stayed asleep for the scan. What a blessing. A few hours after the test (which came back normal) they told us we would be transferred to a children's hospital in Mesa. They were going to take up by ambulance but we signed some forms so we could drive him ourselves because at that point we didn't think he would be having more.
We got to Cardon Children's Hospital around 4pm. Cody left to get back home around 9pm since he had a coffee club the next morning he couldn't miss. That night at 10:30 Kade was just about to fall asleep and he had another one. Afterwards he went to sleep, and woke up Thursday at 6 am. About 10 minutes later he had another seizure, his worst one, a grand mal. They did an EEG that morning, and let me tell you it was not easy holding him down screaming as the technician put the electrodes on his scalp. After they were on he did great laying and watching a cartoon. They wanted him to go to sleep, so I said a prayer and another little miracle happened, he fell asleep just when they needed him to. As awful as the hospital stay was, I did feel the Spirit so strongly, and knew the Savior was helping Kade as he had to go through his seizures and lots of tests and pokes. At 3pm he had his MRI, and the anesthesiologist sedated him for that. At 4pm when he was in recovery after the MRI he had his 5th seizure.
About an hour later we were back in his room and the neurologist finally came in. He had reviewed his tests. The MRI was clear, there were no infections, tumors, or any signs of anything that would cause a seizure. The EEG, which records the electrical signals of the brain showed some abnormalities. There were two areas of his brain where there were neurons firing abnormally. He was diagnosed with Idiopathic Epilepsy, which is a broad diagnoses given to those who have two or more seizures for unknown reasons.
The neurologist started him on Keppra, a medication that should keep his seizures under control. He may still have them occasionally, especially when he gets a fever. The hopeful part of this is that there is an 80% chance that he can outgrow this. Best case scenario would be that in 2 years he can get of the medication.
He hasn't had another seizure since he started Keppra. The side effects are more dramatic the first week, and we have noticed he seemed dizzy and was more clumsy, running into things. Today has been a great day, he seems like my normal Kade. We are praying that Keppra can work for him, it's one of the few that doesn't have liver damage as a side effect. Keppra can cause behavioral problems, loss of coordination, dizziness, clumsiness. It makes me nervous, but I feel like he will be protected and pretty soon other than two doses of medicine each day our life can be back to normal.
We have had so much support....so many thoughtful calls, texts, e-mails, dinners, flowers, presents for Kade....we feel so lucky to have so many people who have made this process so much easier. Love you all!!!
