November 4, 2023 "More Seizures, #13-17"

Oct. 23-10pm Rayden fell asleep on the couch as we were watching TV. All of a sudden, he began to laugh like we have never heard before. I actually thought he was crying at first. It was a very deep, creepy, belly laugh. The kind where you can't even breathe because you're laughing so hard. We thought he was having a funny dream, but it lasted a little too long. Most sleeping laughter is just a chuckle or giggle. This was an out-of-control, deep, strange, laugh. We decided to wake him and take him to bed. As Alex carried him to his room, he continued to laugh. We became alarmed and woke him even more asking him questions. Although he never opened his eyes, he was able to answer the questions through the laughter. Alex mentioned that he heard him do this before and even mentioned it may be a seizure. I thought he was crazy because I had never heard or read of anything like that. He went back to sleep and began to laugh again before we left the room. I went back to his bed, woke him, and asked if he was alright. He said yes and went back to sleep. By the time I got to my bedroom I could hear him doing it again on the monitor but this time it only lasted a minute. #13

The next day, I emailed Dr. Yang, epileptologist. She said laughing type seizures are technically a focal seizure called gelastic seizures. It is associated with a specific brain lesion called hypothalamic hamartoma found in the base of the brain (hypothalamus). It is usually there from birth, kind of like a skin tag. The laughter is usually a "strange/off/weird/evil" laugh not like a happy, giggly laugh. It is often forced and the person cannot stop it from happening, even though they are aware of what's going on. She asked that we video his seizures if we can. 

Nov. 4 Rayden was sleeping with me while Michael and Alex were gone on a fishing trip. Around 7am, he woke and made an aweful sound. I looked over to find him reaching in the sky, shaking his head back and forth, and repeating "oh." I immediately knew he was having a seizure. #14 I rolled him over to his side, started the timer, and ran to get his medicine. I was able to video some of it for his doctor while watching the timer. I continued to comfort, reassure, and remind him to breathe, while he rubbed his head in pain. After 4 min. I began to open the emergency nasal spray. Even though Rayden was still not exactly cognitive of what was going on, he began to fight me not wanting me to put anything in his nose. I don't know if this caused him to stress more or what, but he began to convulse. His arms and legs stiffened and began twitching back and forth. I can't exactly say how long this continued because I called 911. When he stopped convulsing and was able to breathe on his own, I ran to unlock the doors for the paramedics. When they first arrived, Rayden's pulse oxygen level was only 80%. Everything else checked out fine. They made sure his oxygen increased to 98% before they left. I didn't really feel at ease because he didn't seem himself. Although he could shake his head to answer questions, he wasn't responding. I called Deneice Elmore to come over so I wouldn't be alone. By 8am he was lip smacking and his eyes were in a  fixed stair. I actually had to remind him to breathe. He vomited and began choking on his saliva. #15 I called 911 again. Deneice and the paramedics arrived at the same time. The 911 operator was telling me to do chest compressions because Rayden wasn't breathing at all. The paramedic ran in and pushed me out of the way. He yelled at the operator on my speaker phone, scooped Rayden up and ran him to the ambulance to administer oxygen. Deneice reminded me to put on some clothes and grab something for Rayden before jumping in the ambulance. 

As we traveled to Wake Med Children's ER, Rayden's eyes were fixed, his body was stiff. Although he wasn't blinking or responding to my voice, he was squeezing my hand and followed me with his eyes when I moved. His pulse oxygen level decreased drastically, even though he was on the nasal cannula. The paramedic put on an oxygen mask. You know Rayden had to be out of it for him to allow these things on his face! At 8:45 he squeezed my hand so tight that I knew something was wrong. As soon as I got the paramedic's attention his entire body began to jump like hiccups. #16 He gave him 7mL of Versed in his thigh. This made a total of 17mL including the Valtoco I gave him earlier. When he stopped jumping I bent to sing our song over him, 'In Jesus Name' by Katy Nichole. 

We were able to make it to Wake Med without anymore seizures. As soon as we arrived he was surrounded by a swarm of medical personnel. When they moved him from the gurney to the bed, his body tightened and his teeth clinched. He was choking on his saliva, and jumping again. #17 The doctor opened his lips with her fingers and began suctioning his mouth out. She called for Ativan and an intubation tray, but luckily he calmed before that arrived. The nurses poked him over and over in both arms, wrists, and under his arms. I tried to tell him he was a horrible stick, but they had to get IV access. Luckily, Rayden was still unconscious for the most part. They finally got access in his right arm. I discussed his medical history with the doctors, because he has never been to Wake Med before. After hearing he has a shunt, they ordered a brain CT and Xray shunt series. I knew it wasn't the shunt, but they have to rule it out. The doctor got in touch with his neurologist from UNC and they agreed to give him an IV dose of his anti-seizure medication, Lacosamide. Rayden slept with the oxygen mask on for hours. The plan was to just let him sleep the meds off and see if he had any damage when he wakes. He spiked a fever around 1:30pm. They checked for a UTI, completed blood work, and administered an IV dose of Rocefin. He woke around 4pm. Although he was angry to find out he was in the hospital, and hurting from all the IV pokes, he was able to answer my questions so I was relieved. Michael, Alex, and Papa had left the island as soon as they could and drove straight there. When they arrived around 4:30, Rayden began to cry out loud and reach his arms out for hugs. He was still very emotional and agitated. We were discharged around 6 and welcomed home with plates of yummy food from the Elmore family. We hadn't eaten anything the entire day and Rayden was soooo hungry. God knows what you need and will supply! After it is all said and done, I realized I wasn't alone during this entire event after all. I am so thankful God was with me and gave me the strength to help Rayden. I didn't break down from my medical PTSD or have an anxiety attack. God is so good! He has such big plans for Rayden and I know there is a reason for all of his struggles. 🧡💛