August 23, 2020 We did a bowel clean out Saturday. It was a normal Sunday for our family (under Covid quarantine). We had just finished eating lunch. I just took the sheets out of the dryer about to make the beds. Around 12:30, Michael took Rayden outside. He said he kept looking behind him as if he was hearing something. Then it looked like his stomach was doing spasms. Michael asked him if he was ok and Rayden said he was just trying to burp. They were walking around in the yard, holding hands, when Rayden just collapsed. He reached over to help him get up, like we always do, but Rayden was limp. He picked him up and ran in the house yelling for me to come here. When I first saw Rayden he had his head turned to the right. He was soaking wet with sweat even though they had only been outside for about 10 minutes. His heart was racing. I asked him what was wrong and he responded "nothing," which is what he always says. But he wasn't looking at me. I asked him to look at Mommy but he wouldn't turn his head. After asking a few times I turned his head toward me. His eyes were glassy like 'no one was home'. His left eye was turned in toward his nose badly and the whites of his right eye looked red. I asked "Do you see Mommy?" Then he started slurring his words. There was no question something was definitely wrong. We scooped him up and ran out of the house. Michael started driving to UNC as I sat in the back with Rayden calling every number in my phone to get our neurosurgery team. I just knew something was wrong with his shunt. Rayden was really out of it and started falling over in his car seat like a baby that can't sit up or support his own head. I got really scared and literally got IN his car seat and prayed over him. The fastest way for me to get more prayers I thought was to ask on facebook. I knew prayer warriors would drop to their knees. He started reaching for the stars with his glassy eyes and slurring words. Seeing as my phone was already in my hand, I decided I'd better take a picture (1:10pm) and quick video (1:28pm) of this just in case docs needed to see it.
After calling number every number and getting a machine, my phone rang! Melody Watral, PNP from our neuro team called me back! I broke down as soon as I heard her voice. She started asking me what was wrong, where we were, if Rayden was breathing, etc. She quickly assessed that he had probably had a seizure and was in a postictal state. The postictal state is the altered state of consciousness after an epileptic seizure. It usually lasts between 5 and 30 minutes, but can be longer in the case of larger or more severe seizures. It is characterized by drowsiness, confusion, nausea, hypertension, headache, and other disorienting symptoms. She wanted us to take him to Wake Med because it was the closest hospital. She said they would stabilize him and transport him to UNC. Just as the exit came up Rayden started vomiting profusely! It was even pouring out of his nose. Needless to say, we missed the exit. Seeing as we were only 20 more miles to UNC we just kept going. Melody called me back and decided to call down to the UNC ER to let them know we were in route so they could get ready. I yelled for Michael to drive faster, blow the horn, go drive in the breakdown lane, anything! He took the exit on two wheels and flew through all the stoplights. By this time Rayden's eyes had rolled back in his head and he was as limp as a dishrag. When we finally got to the ER we had to go through a tent (thanks to Covid). They were screening cars one at a time and telling people where to go. I got so upset because by this time Rayden was completely lethargic. I jumped out of the van, unbuckled Rayden, and yelled "I'm going in. He's dying." That got them moving. One man ran over to us, but I already had Rayden in my arms and was running toward the door. He got in front of me and plowed the way. He started screaming "incoming!" and people came out of the walls it seamed.
I laid Rayden on the table and stepped back praying out loud for God to help my baby. They surrounded him like a swarm of bees. It was just like the medical shows on TV. People were asking me questions, things were flying in the air, someone was on the phone, they were inserting IVs in both arms, and orders were being yelled. I know it seemed like chaos but they were on top of it. My heart sank when a female doctor at Rayden's head yelled "active seizures, administer ativan!" Rayden was still lethargic, of course, but was stiffened up and shivering. He wasn't violently shaking like I would think a seizure would be. They said he was having focal seizures. A sweet young lady pulled me over to the side and started telling me everything that was happening. Then the female doctor looked up and me and calmly stated that he wasn't getting enough oxygen so she needed to help him. She started bagging him. They gave him a second dose of ativan and then I heard someone yell to call the Pedicatric ICU. I grabbed my phone to call Michael and it wouldn't go through so I took this picture (2:25pm) to send him. They would not let him in. Then things got worse! The chaplain showed up and introduced herself. I lost my mind and demanded that they get his Daddy. Of course, they went 'all protocol' on me saying only one parent is allowed. But I quickly corrected her by screaming "If the chaplain's in here his Daddy needs to be here! If our baby is dying his Daddy needs to be here!" I wouldn't stop so the sweet lady whispered that she would find him. It seemed like just a second and he showed up, apparently he was fighting to get in anyway. I melted because I knew then I didn't have to carry this alone. They moved Rayden to a bigger trauma room across the hall. That's when things went from bad to worse! The PICU doctor arrived and calmly took over the room. He assessed Rayden and asked each person what they had done, what meds were given, what doses, etc. He looked up at us saying he remembered Rayden and he had taken care of him before. ( I didn't remember him, but I didn't doubt it) He must have looked in Rayden's chart because he said Rayden does will with a certain size intubation tube. He looked up at us and said, "Mom and Dad, we are going to intubate him now, you may want to look away." It's not even possible to put into words how terrified I was!!!!! There were so many people surrounding him I couldn't see anyway. Soon they popped the breaks on the bed and started pushing Rayden out of the room. The PICU doctor came to tell us he was taking Rayden to CT and he would meet us in the PICU, room 10.
(4:00pm) The chaplain walked with us to the PICU. Rayden wasn't in there yet so I asked if she could pray with us. Soon Rayden arrived followed by his team of doctors. He was hooked up to so many machines. I reached over to hold his little hand and whisper "I love you, Rayden." I know he could hear me because the machine started beeping and the nurse said, "That's momma induced." The doctor explained that Rayden was on propofol so he couldn't feel anything but he can hear me. This would give his body time to rest. He said they placed a tube down his nose to suction the vomit out of his lungs and they were also suctioning his saliva. He explained how the breathing machine worked and at that time Rayden was not initiating any breaths, the machine was doing all of the work. I just kept asking, "how did this happen?" The doctor reassured us that he would not hide anything in the process from us. The neurosurgery team arrived and stated the CT scan looked good. It did not show shunt malfunction, a brain bleed, any bruising, tumor, blood clot, nothing that they could see. He checked the shunt setting to make sure it was still on 1.5. His eyes were responding to light. All blood work was perfect as well. Since they had no real answers they decided to do a video EEG before doing anything else.
I was instructed to press the red button clipped to the computer if we saw him doing anything out of the ordinary. Oh, how I wished I knew how to read all the lines flying across the screen. She told us that the neurology team would tell us if they saw any seizure activity on the monitor.
(7:30pm) The respiratory therapist came in doing a test to see if Rayden would initiate any breaths on his own. She explained how she was turning the machine down and waiting. If the yellow lines going upward began with a pink line then he initiated the breath, no pink meant the machine initiated the breath. She did the test twice and Rayden was NOT initiating ANY breaths!! I just couldn't believe this was happening. The doctor came in shortly after she left and said he wanted to take the tube out but he was going to give him a couple more hours to allow his body to rest up.
(9:30pm) The nurse said his COVID test finally came back negative. We could take off our 'trash bags' and gloves! Then a bunch of people entered the room. The doctor reminded me that he would not hide anything from us. He believed this would go smoothly because they had not seen any more seizure activity on the monitors. BUT IT DID NOT GO SMOOTHLY!!! They turned down the machine and started to extubate him when all of a sudden Rayden stiffened up, fists clinched, head leaning backward, shivering. The doc yelled, "STOP!" He ran over to the monitor but didn't see anything and actually made a circle in the room. He grabbed his phone out of his back pocket and called someone. I heard his state, "I'm sorry to call you and I know I'm breaking protocol, but I need you to look at room 10's monitor right now!" Michael came over to wrap his arms around me to calm me down. Apparently I was going around in circles shaking my head. After a second on the phone he said Rayden was not having a seizure at that moment like he thought so he believed this reaction was medicine induced. He continued the extubation. Rayden did not cough like you see on TV. He just kept laying there lifeless. After a minute they said Rayden was breathing on his own but not getting enough oxygen so they put on a nose cannula giving him oxygen.
They turned down the propofol and said he should be coming around in about ten minutes. A doctor started dripping water in his eyes and stated that he should blink showing us brain activity. Well, he didn't blink. I know the doctor could see the panic in my face so he stated that it may take Rayden a little longer to come around. He would come back in about thirty minutes. Thirty minutes passed and he came back only to get the same results. He reassured me that it was because Rayden had received so much medicine in the ER and the PICU and then he asked the nurse to step outside with him a minute. I don't know what they said but she returned assuring me that the medicine was just way too strong for his little body. Normally people come around after turning the propofol down within ten minutes. It had already been an hour! I got really scared. She wanted me to talk to him and squeeze his hands, rub his arms, etc. I had been wanting to do that so that was no problem. She said she could see his heart rate rise when we were talking to him so she knew he was responding. Another thirty minutes passed and this time he blinked! "Oh, Praise God!" I shouted! Michael and I continued to talk to him but he didn't know who we were. He was mumbling with heavy eyes. They encouraged us to talk to him about everything we could think of.August 24, 2020 Around 12:00am, he could finally realize that mommy and daddy were with him. In this video you can see that he was disoriented and his speech was slurred when he began to talk at the end. The more awake he got the more disoriented he became. He started screaming, pulling on everything he could, kicking, crying, and even though his speech was slurred he was saying things that didn't make sense. He pulled on the IV's, the toboggan, the nose cannula and even started chewing the red light on his finger indicating oxygen levels. The nurse eventually took off the nose cannula and moved the red light and blood pressure cuff to his feet/legs. He was trying to get up saying he was 'getting in that pool' and going to get his 'tools from that toolbox' (those are the only things I could make out from his slurred speech). I had to constantly suck the saliva out of his mouth because he couldn't swallow. She asked me to climb into bed with him to try to calm him down. I can't even explain how distraught he was. The nurse called the doctor stating that he had persistent delirium, slurred speech, screaming/crying, major anxiety, and having confusion and hallucinations. She wanted to give him something to calm him down. Of course, the doctors did NOT want to give him any more medicine after all he had in his system but after 2 hours of that they changed their minds. They gave him more Ativan but it didn't do anything. So they gave him Haldol around 2:30am. He finally calmed down and fell asleep around 3:00am. The nurse put a sign on the door asking no one to enter and wake him up. He needed to rest. I laid there in the bed with him afraid to take my hand off his chest. I kept thinking he was going to stop breathing again. I could not settle my mind and sleep one wink. He woke up around 6:00am screaming and crying again. We noticed that his IV had infiltrated throughout the night and instead of going in the veins, the fluid was just going under his skin. His left arm was as big as mine! The nurse immediately disconnected that IV and just used the other one. Rayden was so distraught. He could recognize mom and dad and swallow though.
(9:30am) They did not see any more seizure activity on the EEG so the neurosurgery team wanted to get an X-Ray shunt series and more blood work. That also showed the shunt working fine and nothing alarming in his blood work so the neurology team diagnosed Rayden with Epilepsy. I told them I thought Epilepsy was a diagnoses of someone who had lots of seizures. Dr. Shiloh-Malawsky, the pediatric neurologist, stated that actually someone is said to have epilepsy if they experience two or more unprovoked seizures or after ONE large seizure with a high risk for more. They decided to begin Trileptal, a medication to prevent further seizures. She stated that if he responded well to this he would be on it twice a day for at least two years. Keep in mind that ever since he woke up at 6:00am, he has been screaming and crying. It was almost impossible to get him calmed down. They did a neurological assessment. They realized Rayden had good reflexes but he did not have control of his hands. He could squeeze your finger but couldn't reach and grab it. He could look at mom and dad but couldn't talk to us without slurred speech. They tried to sit him up but his head was bobbing like a newborn baby and he fell over having no trunk strength at all. He could swallow so they asked the speech person to come do an assessment to see if he could eat. She tried water in a spoon, then water in a straw. She followed that with applesauce and an ice chip. When she introduced the graham cracker he chewed but gagged. She placed him on a soft diet.
They, of course, said to give it more time although it normally only takes 24 hours to regain everything after a seizure. This video was taken at 10:20am, 22 hours after the seizure. The nurse continuously told us that one of us would have to leave now that Rayden was stable. I don't know how they expected me to handle all of this by myself. It was so difficult to calm him down and exhausting for both me and Michael.
(2:00pm) They moved Rayden out of the PICU and into a room on the 6th floor. They wouldn't even allow Michael on the elevator. Rayden was fine as long as the bed was riding down the hall but as soon as they locked it in place in the room he went right back to crying uncontrollably. I knew this was going to be a long night! The floor nurse immediately noticed that his other IV had infiltrated. She wanted to start a new one. I did not allow her to do this without getting the special team. Rayden has a history of being a very hard stick and they always have to get the special team. She arrived around 3:00pm, she quickly assessed and asked, "who turned his arms into pin cushions?" I told her he came in through the ER and she understood. She did an ultrasound on his arms and only found one spot she could put it. She tried and it blew as well. I stated "that's it, no more!" She agreed and said she wasn't going to stick him again because there wasn't a single place she could anyway. The nurse brought him some milk and he gulped it down. We had high hopes that he wouldn't have to get a new IV. I was so thankful when he fell asleep around 3:30pm. If he continued with all his crying and screaming I didn't know how I was suppose to do this alone! We both needed some rest and food! I ordered some food and rested a little until it got there. When he woke he ate applesauce, a few bites of banana pudding, a few bites of mashed potatoes, and cheesecake. He drank an entire carton of milk and apple juice. Then fell back asleep.
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