December 5-6, 2022 "Seizures (9 and 10)"

December 5, around 3:00 pm. During car rider dismissal, Rayden began feeling bad. He looked up at me and started moaning like he had a headache or was going to throw up. I helped him stand up to take his coat off, but then he stiffened up and collapsed in my arms. I looked at Mrs. Dudley, Rayden's Kindergarten teacher, and said "I need some help!" She helped me lay him down on his side, started a timer, and told the other teachers to take the remainder of the students out of the cafeteria. Rayden's arms were stiff. His lips were clinched shut, and he was drooling. Even though we were talking to him, he wasn't responding. He stopped breathing about a minute in so I began rubbing his chest. Maegan Peterson ran to his classroom to get the emergency medication and someone went to the office to call 911. The assistant principal, Becky Hines, and the SRO came inside. Rayden's lips turned blue (I've seen this before), but then his entire face, head, ears, fingertips and skin turned blue! Mrs. Dudley said it had only been two minutes. I began to panic because I had never seen his entire body turn blue like that. I started praying and yelling, "Please, breathe!" Kassidy Cottle was on the phone with 911 telling them that she couldn't count his breaths because he didn't have any! It was so super scary. At three minutes Mrs. Dudley opened the medication and handed it to me. As I went to administer it, Rayden looked up at me. I was relieved, but wanted him to lay still until EMS got to school. Almost immediately Paige Dunn, our personal Paramedic (haha), drove into the parking lot. They checked Rayden out and we went home. Do you see God? 1- I just happened to be standing right there when he had the seizure. 2-The teachers that were specifically trained to help him were also right there. 3-Paige was our Paramedic. 

Deneice Elmore brought us dinner so we were able to eat early. Of course, we didn't realize this was the 4th part of God's plan at the time. Rayden and Alex played for a little bit before they decided to decorate some Christmas cookies. Around 6:00 pm Rayden looked up and said, "I feel weird. I feel like I'm in a dream." We helped him to the couch to lie down just as he began to have another seizure. He threw up a ton. Alex called 911 as Michael got his medication and turned on the porch lights. This one lasted 3 minutes as well. Paige checked him out again and recommended we take him to UNC ER because this was his second seizure in less than three hours. After EMS left, I called UNC to speak with the Neurologist on-call. He said we needed to add another medication. Since we didn't have any, he recommended increasing the current anti-convulsant medication. As I asked him what to do if Rayden threw it up, he began screaming at the top of his lungs that his head was hurting. He was moaning and holding his head. He was moving all over the couch and Alex couldn't comfort him at all. The doctor heard him screaming and changed his mind. He instructed me to give him the emergency medication. Normally it puts him to sleep within a minute but not this time! It didn't touch it. Soon the doctor recommended we take him to the nearest ER and they would get him to UNC. So I called Paige directly (skipping 911). Alex put Rayden in the ambulance. He was screaming with his head the entire time. Paige pulled some kind of strings and before I knew it, we were on our way to UNC instead of Betsy Johnson. Do you see God again? Alex and Michael packed a quick bag and were right behind us. 

Around 7:00 pm In the ambulance, Paige started an IV and had to give Rayden oxygen. He didn't even care about any of that. He just kept screaming in pain from his head hurting! I couldn't stand to see him like that. I placed my hand on his forehead and began praying for God to take away this horrible pain. "I speak the name of Jesus over you. I pray for your healing, that circumstances will change. I pray miracles over your life, in Jesus name."

 

It wasn't long before he seemed to just pass out. The remainder of the ride he was either screaming in pain, or passed out. I began to feel so helpless and panicked myself. Knowing my history of PTSD, Paige instructed her fellow EMT to give me oxygen. The panic attack passed and I just tried to sit calmly and remember that God was in control. About 15 minutes away from UNC, Paige wanted me to call the Neurologist back so she could talk to him. She asked if he wanted her to administer Kepra because she only had 1ml on the ambulance. He declined and said they would give it to him in the ER.

Around 8:30 pm Just as we entered the UNC ER, Rayden began throwing up. He sat up as best he could even though he was strapped to the stretcher. He threw up about four times, all over himself, the stretcher, floor, hallway and exam room. The nurse soon realized he needed a new IV. I tried to tell her that he would need the special team to do his IV. She said, "Great! I am the special team." Well, guess what...she tried twice with no luck! She decided to call the special team then! He came with an ultrasound machine and ended up trying twice before getting it too! I was amazed at how well Rayden took all these pokes (6). He didn't fight a bit. Did he realize he needed help that bad, or has he just grown up that much?..

Once the IV was operational, the ER doctor ordered blood work, Kepra, Acetaminophen, and Zofran; all administered through the IV. The Neuro-surgery team wanted to rule out his shunt so they ordered an X-ray shunt series and a rapid sequence MRI. When both of these tests came back normal, they recommended tapping his shunt to check the CFS for infection because there was an elevation in his white blood count. This is extremely risky within itself because you're opening up the shunt to possible infection! I was terrified this would happen, so I stayed and watched the entire procedure making sure she cleaned super well!! Here again, I cannot believe how incredibly well Rayden took this. I'm not sure if he was asleep, passed out, or just being that good, but he didn't move a muscle. I watched as she inserted that long needle (7) into his skull to draw some CSF out. It looked clear. She even tested the valve pressure and it was fine as well. I made sure she cleaned the site double when she was finished, and prayed for no infection to creep in. The shunt was completely ruled out as the culprit, when the CSF culture came back negative. The ER team decided to admit Rayden overnight as they introduced a new anti-convulsant medication on top of his current one. They gave him an IV loading dose of Lacosamide. 

December 6, Around 3:00 am Rayden got a bed in the short stay area of the hospital. Alex curled up in the bed with him as Michael and I took the bedside reclining chairs. I may have dozed off once or twice but by 7:00 am Rayden was awake and starving! He ate all of his breakfast and wasn't showing any side effects to the new medication so the team agreed to discharge him around 2:00 pm. 

December 12, 2022 I had a virtual phone visit with Rayden's neurologist, Dr. Carolyn Zook-Lewis. She wants Rayden to continue taking Oxcarbazipine 10ml and Lacosamide 6ml, both twice a day for another month. Then we will decrease the Oxcarbzipine by 1ml a week until he is only taking the Lacosamide. If he has a seizure while we are titrating this medicine off we will increase the Lacosamide. This is a tricky process and it seems to be something that we will continue throughout his life.