Around 6:45 this morning I was awakened to Rayden breathing hard and saying, "Mommy" about twice. I could see on the monitor that he was turning his head back and forth. Not a jerking motion, just a constant movement. I thought he had a bad dream. Michael got up to check on him when he wouldn't answer me on the monitor. He asked Rayden if he was ok. He actually answered with one word, yes, but Michael could see something wasn't right. He said Rayden tried to sit up but couldn't. He was shivering and his eyes were looking back and forth fast. When Michael picked him up Rayden was as limp as a rag doll. He just leaned over his shoulder lifeless. Michael laid him on our bed and I could see his eyes were weird. He was still breathing super hard. I started asking him questions and he wouldn't answer at all. Michael ran to get his emergency medicine. Rayden began making gurgling noises like he was choking on something, and his stomach was...jumping (don't really know how to explain it). His lips were clinched shut super tight and he didn't seem to be breathing. We rolled him to his side and he was unresponsive. His left arm was lifeless and his mouth seemed to be clinched harder shut. He acted like he was going to throw up but he couldn't open his mouth. He looked like he was choking and wasn't breathing. I tried to help him by opening his mouth but it wouldn't budge. His eyes were fixed and dilated. We made note of the time and I went toward his nose to administer the emergency meds. All of a sudden he opened his mouth and gaged, but he didn't throw up. He looked around with a "Where am I?" look on his face. It probably totaled about 4 minutes. After following a few commands like 'look at mommy, look at daddy, are you ok' I let him drift back to sleep while I messaged his neurologist. He didn't wake until 9am. I would not leave his side for fear this would happen again. His seizure watch did not alarm this time because he wasn't violently shaking I guess. So much for that 'at ease' feeling, huh?
Dr. Lewis, pediatric neurologist, messaged me back late this evening. She has decided to increase his medication from 7.5ml to 8.5ml twice a day. She said the maximum dosage for his weight was 10ml so we do have a little more room before we have to seek a different medication. I'm so thankful for the medication that can keep seizures manageable, but honestly, I just wish there was some way to make them disappear and NEVER come back. We went 19 months, just over a year and a half, without having a seizure. Just when we thought this mess was under control, it came back with a vengeance. Now he's had five in the last 4 months!!
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