It was just a typical Saturday. I was cleaning the house, while Michael, Alex, and Rayden were outside doing things in the yard. They decided to go get some lunch at Mi Casitas, but I stayed home to finish cleaning. Rayden fell asleep on the way back home, so Michael brought him inside to finish his little nap on the couch. I sat in the recliner close to him eating the lunch they brought back for me. Rayden really wanted to help Daddy put the new thermostat on the grill so Alex came in to see if he was still asleep. He noticed Rayden shaking on the couch. I jumped up and saw that his eyes were open, fixed, and fully dilated. He was laying on his side already and his entire body was violently shaking. I stated out loud that it was 2:12pm. Alex ran to the back door to yell for Michael, and grabbed the rescue medication. It felt like hours before it finally turned 2:15 so I could give him the Diazepam. Here again, it did not work immediately. Alex called 911 while I prayed. Rayden stopped breathing, his lips turned blue, around his nose seemed to be turning white, and he was drooling really bad. I began praying out loud and yelling "He's not breathing!" I felt like dying because I didn't know what to do. I couldn't perform CPR because he was still seizing so I just blew in his face praying it would help him breathe. The seizure finally subsided at 2:17. His eyes were glassy and his speech was slurred, but at least it stopped. The Paramedics arrived at 2:35. They wanted to take him to Betsy Johnson Hospital because his eyes were still glassy and he had an elevated heart rate of 120. We decided to keep him home seeing as we went to UNC last week and they just watched him a couple of hours and sent us home. The paramedics sat with us for a while answering questions and reviewing seizure safety. I was so upset that Rayden had stopped breathing and I didn't know what to do. The paramedic said he understood why I blew into Rayden's face because he couldn't imagine how very difficult it must be as a Mom to watch your baby not breathing, but unfortunately, you cannot perform CPR on an active seizing patient. That is the most helpless feeling in the world.
I messaged his neurologist for advice but don't expect to hear from her until Monday. He goes back to UNC Tuesday for a seven layer MRI. In the meantime, we are all taking turns keeping our eyes on Rayden at all times.
Dr. Lewis replied before 9am Monday morning. She felt it was strange that he is having increased seizures all of a sudden and is glad the MRI is scheduled for tomorrow. She increased his oxcarbazepine from 6.0 to 7.5 ml twice a day. If the MRI shows that his shunt is ok and he has another seizure then we will push the dose to the maximum and talk about starting another medication.
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