Welcome to Rayden's page. Here you will find a story of our sons journey with Spina Bifida. There have been many challenges and struggles through the years but it's been worth it! I have tried to keep this blog updated. It might be easier to navigate by using the side bar and looking for specific dates or posts. You can even use the search engine for something specific. I welcome comments as well.
Rayden was super excited to pick out a pumpkin. He had a hard time choosing so we ended up getting four! He wanted to carve one right away. We finally carved our Jack-O-Lantern on Oct. 19 and the pure amazement in his eyes makes life worth living. Rayden gets so much enjoyment out of every thing he does. We cherish all these 'firsts' with him.
We believe Rayden had his second seizure today. It wasn't as clear cut as his first episode which is why I say "we believe". I'm also beyond THRILLED that this wasn't at all like his first seizure/s.
Rayden was in the library with Mr. Graham when he noticed that Rayden seemed extra sleepy. He put his head down on the table and Mr. Graham got worried. He asked Mrs. Charlotte, who was also in the library, if he seemed extra tired when she was working with him earlier. She didn't think so. He asked Mrs. Raines, who happened to be walking by, the same question. She also said no, and came to assess Rayden. She came in my classroom shortly after and asked me to go check on Rayden because his eyes seemed glassy and he was extremely sleepy. When I got to the library Rayden was full blown asleep with his head on the table. I tried to wake him and he began to moan and groan this weird howl. When he looked at me his eyes were glassy and red. When I tried to stand him up to come sit with me he fell to the floor with no strength at all. He curled up on the floor moaning. I agreed something was wrong, but since he didn't seem to be in a seizure like before I didn't think I needed to give him the rescue medicine. I honestly didn't know what to do. This, of course, didn't make Mr. Graham feel any better! I was suppose to KNOW what to do. I asked him if he felt comfortable with Rayden laying there on the bean bag until I took my class to PE. He agreed but before I could get my class lined up Mrs. Charlotte came rushing in and said "go now!" I ran back to find Rayden sitting in Mrs. Raines' lap holding his forehead screaming "my head!" I knew then that I needed to just take him home and call the doctor. She helped me gather my things and I carried Rayden down the hall. He was screaming and moaning so loudly that teachers just closed their doors as we passed by. Rayden was asleep in the van before I got out of the parking lot. By the time Michael got home I had already talked to Dr. Mary Ann Chiodo. She believed he had another seizure but wanted me to call his neurologist to see if she may want to up his medication. I couldn't get in touch with his neurologist so I called the hospital and paged the Pediatric Neurologist on call. When she called me back we discussed the events of today as well as his history of SB and his first seizure episode. She asked me to wake Rayden up so she could assess him over the phone. As soon as Rayden sat up he began to scream "My head!" holding his forehead again. Then he would lie back down. I offered him some cake and he seemed to want it. He got off the sofa and walked to the table but as soon as he got there he grabbed his head and said "I don't want it." and went back to lie down. The doctor then spoke with her attending and they agreed we needed to take Rayden to Betsy Johnson to get a CT scan to rule out shunt malfunction. After about thirty minutes of discussing this, Rayden sat up as if nothing was wrong and asked Daddy if he could go outside. Apparently he had slept it off. A couple days later, his neurologist called me back. She determined that the medication they had him on must be working or the episode would have been worse. She didn't want to up his dosage just yet. She wanted to give it more time to get deep into his system.
Rayden lost his first tooth today. We didn't even know it was loose so we couldn't give him any warning. We were riding home from school when Rayden yelled "My tooth fell out!" I turned around to see his little hands dripping blood and a tiny tooth in his fingers. Of course, he started crying. I'm not sure if it was the blood, if he was scared because his tooth fell out, or if he thought something was terribly wrong. We were almost home so I just told him not to drop it and that it was perfectly fine. When we arrived home I cleaned up the blood and explained that he was going to get a 'big boy' tooth in it's place. His mood quickly changed. He was excited and couldn't wait to tell everyone.
The tooth fairy brought Rayden a 5 dollar bill for loosing his first tooth at 5 years old. He was so excited.
Sept. 21, 2020- First day of face to face Kindergarten
Rayden was super excited to join his classmates IN CLASS for the first time. We have been doing on-line learning for a while but there's nothing like actually going to Kindergarten. Even though the students have to be six feet apart and wear masks, we know Rayden will learn more in a school environment. He loves his spider man mask, new 'light up' shoes, and shiny RED water bottle. We are so proud of Rayden and all he has mastered this summer. He went to school WITHOUT his walker and walked the entire school over. Rayden is so used to going to school that he wasn't upset about going to Kindergarten, but reality hit me walking out of his classroom. My baby is growing up.
I dare say his favorite part was playing on the playground. Mommy didn't have any students this day (still virtual learning) so I was able to go play with him to show his teachers his abilities on the playground equipment. We had a blast. Rayden made a new best friend today, Maylen. They sit at the same table and both love to talk. He loves his teachers and is such a rock star at school.
After telling the nurse all about Rayden's new development (seizure) since we were last seen, she went straight to ask Dr. El-Dairi what she wanted to do next. She did not want to dilate Rayden's eyes. She wanted pictures of his optic nerves but this time they did it without any flashy lights. Rayden did very well and of course his optic nerves looked the same-scarred but not swollen. When Dr. Brian White, Neurologist working with Dr. El-Dairi, entered the room he immediately asked about our eventful time. He inquired about what the doctors at UNC told me as to WHY Rayden had a seizure. I informed him that they just told me he had epilepsy because they could not find a clinical explanation as to why he had the seizures. He said "that's one way of putting it, but epilepsy always has an explanation." He asked me to go through the events that led up to Rayden's seizure and everything that happened afterwards. He said the description I gave him was slam dunk the description of a seizure. He said that the UNC team did a very good job of going through all the things that could lead to a "one time seizure" but he believes there are clear reasons as to why Rayden had this seizure. He then inquired about all the MRI's Rayden has had in the past. (Apparently he had just spent quite some time going over Rayden's MRI history) We already knew that Rayden had a Chiari II malformation that is now corrected. He has always had, and will continue to have, large ventricles. He never developed a corpus callosum or a septum pellucidum. Dr. Brian White then proceeded to tell me that he has polymicrogyria. This very clearly explains why he had the seizures. He says seizures come from the surface of the brain. He explained that the brain was like a bowl of thick spaghetti that folds on itself. If the 'noodles' are too thick, too thin, too many or not enough folds, folds too close together or far apart; these are all abnormalities of the brain. In Rayden's case, his brain is folded too much. There are tons of folds in a single area instead of just a handful of folds. Polymicrogyria, literally means too many (poly-) small (micro-) folds (gyria) in the surface of the brain. This is very clearly a reason for seizures. Common problems associated with PMG in general are: swallowing and speech difficulties, reflux, seizures of varying degrees (about 90% are affected with seizures at some point in their lives), developmental delays, lack of muscle coordination, impaired cognition of varying degrees and cerebral palsy. Many cases are mild enough to go undiagnosed and children are labeled as "developmentally delayed" or having a "seizure disorder". Dr. White agreed that Rayden needs to be on both medications that UNC placed him on. He says Rayden's brain is kind of two fold. He has the areas of his brain that didn't form correctly when he was developing. He has the areas that changed due to the chiari malformation and pulling everything down. Some of the areas of polymicrogyria are all over his brain. And of course he has the changes from the pressure of the hydrocephalus. They believe all of these things are causing him to have a vision issue. He said he noticed that Rayden's visual acuity is much better when they only give him one letter instead of an entire line of letters. They see that often in patients that have cortical visual impairment. (Cortical meaning the surface of the brain.) The eye receives the message and sends it through multiple paths through the brain to the occipital lobe. If you have an issue with these paths or the occipital lobe then the brain has problems interpreting what you see. In Rayden's case he has both, a malformation of many areas including the occipital lobe, as well as an injury to them. So the processing of his vision is impaired. There's no structural problem with his eyes, he can see 20/40. The problem lies within his brain. At his age he can mostly just fill in the blanks but some things will be harder for him to process (letters, numbers, written print). They believe his vision will improve with time. Dr. El-Dairi went into an example of Dr. Oliver Sacks who has a cortical processing disorder where he cannot recognize faces although his brain operates on a superior level. You can have parts of your brain that do not operate well on one level but be super well on other levels. This is what we are seeing with Rayden. He has reactions that are way more than what we expect from him in certain areas and very low in other things. She recommends taking Rayden to a neural behavioral psychologist to do testing. They can identify his strengths and weaknesses giving us strategies on how to improve weakness and recognize strengths to target his education. She wants to stagger his appointments with his neurology team so that he is getting some kind of test done every six months whether it be MRI, or optic nerve photos. She concluded that she does not believe he has a central scotoma (what she originally thought). She firmly believes, after seeing his MRI, that his issues come from his abnormalities of his occipital lobe not his vision.
August 27, 2020 Rayden woke up only one time during the night. It sure was good to be back home in our own beds. He was actually pretty strong on his feet today too. He wasn't slurring his words. He only had one ugly mood swing the entire day. He only needed one nap. He began eating like a horse! Michael and I say he is back to about 99% himself now! What a huge improvement.
August 28, 2020 Rayden slept through the entire night! He is playing on the floor with his toys just like normal. He is stable on his feet and can even stand still and balance just like he used to. Every single thing he says now is clear and understandable! He did not have any mood swings all day. Michael and I believe he is back to 100%. He enjoyed playing with Granny today and playing in his pool. Like my dear friend, Anne Turlington, says "It's time to get busy living."
Yes, he is on medication twice a day to hopefully prevent further seizures and will soon have a rescue medicine in hand in case it does happen. It's so crazy to think just a few days ago he couldn't breathe on his own, swallow his own saliva, hold his head up, talk or walk! We honestly thought we were going to lose him or if he did come back to us he wouldn't be the same. If you don't believe in God's miraculous Power just look at Rayden. I know God has big plans for this boy. It's like Satan wants him gone but God keeps saying NO WAY!
August 25, 2020 Rayden woke up early to a lady trying to take his blood again! What a way to wake someone up! Now he is screaming for his Daddy. He keeps digging in the EEG cap and wants it off his head REAL BAD!! I don't know why they can't make an exception for little kids. It's not like the nurse is in here helping calm him down or stopping him from falling off the bed or pulling the EEG leads out of his head. Rayden seems to have control of his hands and head today. He understands what's going on but he is so distraught. His attention span is about two seconds and it just seems like his insides are fidgety.
9:32am
9:30am The child life lady found him a tool box to play with and that made him smile. He wants to play but keeps falling over like a baby with no core strength. I have to sit with my arms protecting him so he doesn't fall over and hit his head on the bed rails. He will sit up and play for just a minute and then fall over and rest. He is in and out of it all day. He is so terribly tired that he just can't stay awake very long at all. Docs said his brain is damaged from the seizures. It has already been more than 24 hours so now they are saying it may take a few days to recover or he may never regain the abilities he had before! I'm not accepting that!!
The neurology team said they have not seen any more active seizures on the EEG so he can get that taken off today, THANK GOD!! They were going to do an MRI today but have decided that the benefit did not outweigh the risk. They did not want to sedate him again this close to his seizures if they can help it. It is so very hard to keep him distracted and keep his hands off his head. Dr. Shiloh-Malawsky said she believes the medication they chose for his epilepsy is correct because he hasn't had any more seizures and she sees a calming of brain activity on the EEG. At 10:04am I took this video of Rayden in my arms thanking everyone for their prayers. His speech is better than yesterday but still slurred. You can tell he is extremely tired too. It was a brief moment in his day that he wasn't screaming/crying for Daddy.
The next video was taken at 10:14am only 10 minutes later. He was crying and fixated on taking the EEG of his head again. His speech is still slurred but maybe you can get an idea of how hard this was. His mood swings were every few minutes and from one extreme to the other.
11:22
By 11:00am he had pulled the mesh toboggan off, the two leads on his chest monitoring his heart and even two of the wires from his head. He was screaming for me to leave and it was just unbearable for us both. I stepped out and told the nurse she HAD TO GET SOMEONE to get that EEG off his head NOW or I was going to scream myself. I tried every single thing I could to distract him. At 11:22am I even allowed him to order his own food. I didn't care if the people on the other line could understand him or not. I didn't care if they got mad. I needed some help distracting him. Fortunately the lady on the other end was so sweet. She talked to him a few minutes taking his mind off things. FINALLY, the people showed up to take the EEG off. They used cotton balls soaked in what smelled like alcohol to disconnect the leads. Rayden sat very still, although I had to hold onto him because he was falling over. He was so relieved when they got it all off. He didn't even care that there was tons of glue stuck in his hair.
1:16pm
12:30pm The speech lady came to watch him eat his lunch. He wanted to be unhooked from everything before he ate so she took it all off. That boy was so relieved! We moved him to the sofa bed to eat his lunch. He had a grilled cheese sandwich and ate it without any problems so she cleared him to eat anything he wanted. He begged for Doritos, so guess what he got! A step in the right direction.
2:03pm
2:00pm The OT came and wanted to see if he could stand and walk. We tried but his feet were like jello. They kept slapping each other and not walking forward at all. He only made it about half way down the hall and we got a wagon to pull him the rest of the way. He had already lost his balance more than five times. He really got upset and angry! It was heartbreaking.
The docs came back in and told me to prepare for a couple more days in the hospital. They trained me on his rescue medicine and informed me that his seizure medicine must be taken on time twice a day. If he wasn't occupied he was crying.
3:25pm
I tried to soothe him by giving him a warm bath and washing his hair, which was difficult enough because he would start to fall over if I wasn't holding on to his back. It reminded me of when he was a little bitty baby. I allowed him to lay down on his belly in the water and pretend he was swimming. I asked the nurse to give him some fresh bed sheets in hopes that he would fall asleep. He curled up in bed and finally fell asleep around 3:25pm. I was so relieved. His body needs to rest so he heal.
He woke up around 7:00pm and ate his dinner. He had chicken nuggets, fries and orange gatorade (his favorites). Apparently the nurse had been talking to the doctors about how distraught he had been all day. They came in and asked if I thought he would heal faster at home where he wouldn't be so fixated on missing his Daddy and in a strange place. I agree this might rest his mind enough to heal so maybe he can go home tomorrow instead of a few more days.
This next video was taken at 7:24pm. It really shows how he still does NOT have control of his speech, head or body. Harrison sent Rayden some cute, silly pictures while he was sleeping to make him smile. I was so excited to see that he recognized his buddy and wanted to send him a thank you video clip. He loves his buddy, Harrison.
He only stayed awake an hour and a half. He was exhausted and wanted mommy to crawl in bed with him and have a "slumber party." He was fast asleep in minutes.
August 26, 2020 Rayden woke at 4:00 am ready to go!! He was talking clearly, swallowing, holding his head and body up. He ate most of his breakfast and actually asked to go walk. I was a little worried but knew we had to try. He stood up with persistence and started right out the door. He was wobbly but was taking his own steps. He walked all the way around the hall holding my hand only loosing his balance about five times. He even had a since of humor because he started acting like the kidnapping bracelet on his arm was a watch and he said "Hey Siri, what time is it?" The nurse got so tickled with him.
5:34am
The doctor came in and saw the major improvements and agreed it would be a more rapid healing at home where he could settle his mind. So we packed up and called Daddy. When they made Michael leave the hospital he did not go far. He got a hotel room with his mom and dad down the street. He was probably more upset away from Rayden than I was trying to deal with it all. At least I could see him, Michael had to rely on my calling/texting him with information. He also was going through every single minute of that day trying to figure out what he did wrong that could have caused Rayden's seizure. He was so worried that Rayden would not regain his abilities and I know it was a trying time for him.
11:56am
Rayden was so excited to call Daddy and tell him he was ready to go. When he saw him waiting at the door he screamed, "DADDY!" It just echoed throughout the foyer. It sure did my heart good to see the two of them reunited. Rayden surprisingly did not sleep on the way home. He wanted some chips, so we stopped at a convenient store. He ate those chips like he hadn't eaten anything in months. It was kind of funny to see. When we first got him he was still wobbly on his feet and very, very tired. He didn't understand why he couldn't walk like he could before all this happened. He was getting very frustrated and fighting everything because he was so tired. He would slur his words badly when he got tired too. He ended up taking two naps that day. He was snappy with his mood swings just like in the hospital but the doctors told me to give him some time to heal. If it didn't correct itself then they would look at the medicine being the cause.
This post is hard for me to even begin because it was so traumatic. There is a lot of information but I recorded every thing I could in order to see a pattern in case this happens in the future.
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.
Of course they did a COVID test and instructed me and Michael not to leave the room until the test came back. If we left, even to use the bathroom, we could not come back in. She pulled a little toilet out from under the sink saying to just close the curtain. This is the ONLY time the nurse left the room. She came back as soon as we opened the curtain. Michaels mom and Dad, my Mom and sister, Patsy, were all in the parking deck just dying to get in, but we could only keep them informed by texting.
(6:20pm) Someone finally came to hook Rayden up to the video EEG. She measured and marked his head with a green pencil. Then she started putting this stinky glue on the marks. She attached a wire to each mark, then blew it dry with a little blower that looked like a nail. He would squirm every time she blew it so I knew he was in there somewhere. I don't know how many wires she attached to his head exactly but if I had to estimate it would be 50 at least! Then she glued a white, mesh toboggan over all the wires. Somehow she hooked all those wires into three giant black chords that hung out of the top of the toboggan.
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.
Our little chef saw a cookie recipe on the back of his M&M's and thought it would be a great idea to make some for his teachers and friends at open house. He had the absolute BEST time making the dough from scratch and watching them rise in the oven. He was so proud of himself. He has the sweetest heart and kindest spirit. I pray he stays this way forever.
Due to COVID this is going to be a very different kind of school year. We are starting the year off remotely in hopes that we can soon unite in the classroom. Open house was done by individual appointment and everyone had to have temperature checks and wear masks. I am heartbroken that Rayden's kindergarten experience will not be 'normal' but let's face it...nothing about this child is normal anyway!! I tell him over and over again "Why try to fit in when you were born to stand out!" So I suppose his K school year will 'stand out' too!
Rayden refused to take his walker to school this year. (If you recall he learned to walk everywhere without it this past summer) He was excited to pass out his cookies to everyone he met but was a little shy to talk to his new teachers. Can you believe it? Rayden, NOT TALKING, hahaha!! He really wanted his old pre-k teachers and just didn't understand why he couldn't go in there again. (Of course, we went to see them.) I believe Rayden's teachers are perfect for him. Mrs. Jones has personal experience with special needs and Mrs. Faison is a CNA. If we ever do back to school face to face they will be wonderful for him. I'm sure they will give him all the love and attention he needs. Rayden will continue to receive Physical Therapy, Occupational Therapy, Speech, and EC resource 1-on-1 during the remote learning.
His absolute favorite part of this day was being able to play with his best friend, Harrison. They were both so excited to see one another and played with their masks on with no complaints. They even matched unplanned. Hopefully we can schedule more time for the two of them to get together.
We have always tried to make sure Rayden got the very best care possible. His specialty care has always been at UNC but we have taken him for second opinions at Duke, and Shriner's before. So when Dr. Grace, pediatric opthalmologist, wanted us to take Rayden to Duke for another opinion, we didn't have any issues with it. But due to the Corona Virus he could only have one adult with him so I had to take him alone. Luckily, Rayden is a 'big boy' now.
We had to wear masks the entire time and we stayed far away from people. The first person that did a little exam on Rayden quickly noticed that he wasn't identifying when things came into his view from the sides (visual field). She stepped out and got a doctor. He did a little exam and disagreed with her. They showed him four colored dots on the wall (2 green, 1 white and 1 red). Rayden counted over and over and swore there were three. He said there were 2 red and 1 black. But when she did the colored blind test he could trace the red numbers inside the green dots with no problem, weird. When Dr. El-Dairi, the neuro-opthalmologist, did an exam she stated that Rayden was too smart for their vision test because he's a good guesser. He would match the letter shown on the card to the one on the wall WITHOUT even looking at the wall!
After dilation, Rayden was taken back to get pictures of his eyes with two machines. The lady doing that swore he had nystagmus because he couldn't focus on one spot long enough for her to take the pictures. I honestly believe its his age and lack of attention, not nystagmus. But she put it on his chart anyway. Dr. El-Dairi said the pictures showed that his optic nerves were scarred but not swollen. He has permanent scarring from his massive hydrocephalus at birth (we knew that). She is requesting his MRI from last week because she wants to see the status of his occipital lobe and see if his third ventricle is dilated. I contacted Dr. Elton, Rayden's neurosurgeon, shortly after leaving and he stated that Rayden's third ventricle is completely decompressed. The scan shows "his occipital lobe is dysplastic, which means is visibly structurally different than what it should look like. Doesn't tell anything about function, but as with anything in the brain, if it is structurally different than what it is supposed to be, then the assumption is that the function of that area also must not be what is supposed to be. We have no way to image any of that, it is all based on clinical examination. Vision is interpreted in the occipital lobes, so if she has vision concerns, it could be related to the way his brain is built."
Dr. El-Dairi believes Rayden may have central scotomas but he's too young for the visual field exam for confirmation. A scotoma is blind spot in your visual field while the surrounding areas appear normal. A CENTRAL scotoma is a blind spot that occurs in the center of your vision. It may look like a black spot for some and for others it may be a blurred smudge or a distorted view in your straight ahead vision. It cannot be corrected or treated with glasses or surgery. You may have to use aids for visual support. She wants him to start patching his right eye for two hours a day again and practice on a visual fields app on his ipad. Next appointment is September 3.
April 27- Rayden finally got the hang of standing up WITHOUT having to pull on something or someone. This video was taken May 19 when he had perfected it.
May 17- Rayden has learned how to reel in a fish on his own. Nice catch!
June 2- Never really thought this would happen but God is always showing me His power!! Rayden has recently started walking outside WITHOUT assistance. Yes, it's uneven terrain, but Rayden is so motivated and determined to walk without his walker! Take that Spina Bifida!
August 1- Balancing in one place has always been a difficult task for Rayden. He's been working on this for six months now. When he started he couldn't balance for even a 3 count!
We have kept Rayden very isolated this summer due to the Corona Virus. We have not taken him out in public to the grocery store, department stores, restaurants, or even church. He has not gone ANYWHERE!! His Spina Bifida Clinic appointments have been postponed and rescheduled numerous times until finally, his doctors said he really needed to have some test done in order to stay on top of his care. The hospital only allowed one adult to accompany the patient so Rayden and I had to do these visits alone. Rayden is a 'big boy' now so it wasn't as bad as it used to be. It was very strange having to wear a mask the entire day and there were very few people in the hospital actually. Rayden had to have an MRI, x-ray shunt series, renal ultrasound, blood work and meet with two of his docs.
MRI- I cannot be more proud of Rayden!! He truly is a BIG BOY now! He went right into the MRI exam room and knew exactly what to do. (I have been explaining the process to him for a week.) I could tell he was a tiny bit scared but my brave boy did it anyway. He placed the ear plugs in his ears and laid down on the bed waiting for the helmet. When they started to move the bed he reached for my hand and asked if I was going to stay. I told him I wouldn't leave his side and he squeezed my hand with both of his little hands the entire time. He DID NOT CRY A BIT!!!!! When we met with Dr. Elton to adjust his shunt he stated that Rayden's scans looked good contrary to what his new student thought. (He had a student doctor with him) He said he had to show his student Rayden's massive hydrocephalus from birth so he could see how far he has come. Let's take a look at a normal brain MRI beside Rayden's MRI. The white is fluid.
Normal MRI
Rayden's MRI
Rayden's MRI from birth
Normal MRI
Rayden's MRI
Now that you have wrapped your brain around all the fluid Rayden has inside his skull, take a look at the darker areas. This is his actual brain muscle. So as you can see, a lot of his brain is either missing or under-developed. Most of the damage is in the back of his brain. Dr. Elton was not surprised to hear that Rayden was diagnosed with a non-verbal learning disability. He says his pace of learning to retain information will be slower than his peers but he also reminded me that before birth they thought he would be SEVERELY handicapped. By no means is he severe! He asked me about his ability to recognize letters/numbers/shapes, and I told him how Rayden struggles with this. Again, he was not surprised. The occipital lobe is located in the rear of the brain. Rayden is scheduled to see a neuro-opthamologist from Duke next week and Dr. Elton said he would not be surprised if she found that he has permanent visual field loss due to the damage to his occipital lobe. Obviously Rayden's brain isn't built like everyone else's. His brain has to "re-route" things so it may take longer for him to figure things out because his brain has to figure out which part is now going to take on the job that the missing parts were suppose to do. It's kind of confusing but miraculous too. Rayden is so intelligent so that leads us to believe he will eventually get the academic stuff down pat too. Since his scans haven't really changed in 2 1/2 years, Dr. Elton said we could probably go another 2 years before seeing him again.
X-ray shunt series- Look at my big boy during his X-ray shunt series. This requires several x-ray images in multiple positions. Rayden is a pro at this so no tears here as well! He had to take his mask off because it interfered with the images.
Renal Ultrasound and labs- Here again, not Rayden's first time. He is very familiar with this exam. He doesn't like the gel on him and wanted to hold my hand again, but no tears. The only time he cried all day was during the blood work. I try to prepare him for everything so he knows what to expect. I kinda left this part out until the last minute. Of course, when I told him he quickly told me he didn't want to do the blood work part. I am very proud of how he handled it though. They had to stick him twice. He kept saying "Take it out!" and "Stop!" but he did very well. We met with Dr. Ross over tele-medicine for the results. His blood work looks good. She said his ultrasound was a little concerning though. It revealed that his kidneys are growing and look normal but they are a little more echogenic than they have been in previous studies. In an ultrasound the kidneys should be about the same color as the liver. If they are whiter they are echogenic. Echogenic kidneys can be a normal variant but can also indicate an underlying kidney disease. She wants to send him to the pediatric nephrologist to check this. She doesn't feel like its urgent because his creatinine levels in the labs were good. He was followed by a nephrologist when he was younger because his kidneys were not producing the hormones to regulate his blood pressure. He was on medicine for a while but it finally resolved itself. Maybe this will too. Dr. Ross also wants to do a urodynamic study soon to discuss his options for bladder continence surgery when he turns 7 or 8 years old.
I am reminded every time I take him to the doctor that our little MAN is a true Miracle. Yes, he has obstacles to over come and will always have mountains to climb. But, think of the view he can see from the top! I pray this blog will help him see how far God has brought him.
Rayden's orthodist, Bob, placed these carbon fiber rods on the back of his AFO's to prevent him from leaning forward. If you look closely at the picture you can see where his AFO's are bent and almost broken because he is leaning forward so much. This is a temporary fix until he gets his replacement pair that will have more support and then ultimately a new kind all together.
Rayden has always been fascinated with boats. His favorite store is Cabelas because he can get in every single boat and pretend to drive it around. Gerome Heath (Uncle G) got Rayden a life jacket when he turned 4 years old in hopes to take him for a ride on his boat. That year was filled with surgeries, casts, homebound, and intense therapy. It is finally safe to take him on a boat ride and Rayden could not be happier! Watching how much he enjoyed his time on the boat was absolutely priceless. His body was overflowing with excitement. His eyes filled with joy. His laughter was contagious as his smile stretched from ear to ear. He kept screaming, "This is sooo much fun!" and "It's as fast as a jet engine!"
Corona Virus (Covid 19) has ruined the end of Rayden's final year in Pre-K. Although, I have enjoyed this one-on-one time with him, I know how much he really needs to be in a school environment.
Rayden recently got approved for Speech Therapy to work on pragmatic thinking and social interactions. He is enjoying working with Mrs. Pam, even if it is on-line.
We also continued Occupational Therapy with Mrs. Laura. Since this is also on-line I have to be the facilitator, get everything together and keep Rayden working. It's been a new experience for me but I enjoy spending this time with him. It also opens my eyes to ways I can help him better.
Rayden lost his first tooth today. We didn't even know it was loose so we couldn't give him any warning. We were riding home from school when Rayden yelled "My tooth fell out!" I turned around to see his little hands dripping blood and a tiny tooth in his fingers. Of course, he started crying. I'm not sure if it was the blood, if he was scared because his tooth fell out, or if he thought something was terribly wrong. We were almost home so I just told him not to drop it and that it was perfectly fine. When we arrived home I cleaned up the blood and explained that he was going to get a 'big boy' tooth in it's place. His mood quickly changed. He was excited and couldn't wait to tell everyone. 
August 28, 2020 Rayden slept through the entire night! He is playing on the floor with his toys just like normal. He is stable on his feet and can even stand still and balance just like he used to. Every single thing he says now is clear and understandable! He did not have any mood swings all day. Michael and I believe he is back to 100%. He enjoyed playing with Granny today and playing in his pool. Like my dear friend, Anne Turlington, says "It's time to get busy living."
He only stayed awake an hour and a half. He was exhausted and wanted mommy to crawl in bed with him and have a "slumber party." He was fast asleep in minutes.
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.
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.
Rayden refused to take his walker to school this year. (If you recall he learned to walk everywhere without it this past summer) He was excited to pass out his cookies to everyone he met but was a little shy to talk to his new teachers. Can you believe it? Rayden, NOT TALKING, hahaha!! He really wanted his old pre-k teachers and just didn't understand why he couldn't go in there again. (Of course, we went to see them.) I believe Rayden's teachers are perfect for him. Mrs. Jones has personal experience with special needs and Mrs. Faison is a CNA. If we ever do back to school face to face they will be wonderful for him. I'm sure they will give him all the love and attention he needs. Rayden will continue to receive Physical Therapy, Occupational Therapy, Speech, and EC resource 1-on-1 during the remote learning.
His absolute favorite part of this day was being able to play with his best friend, Harrison. They were both so excited to see one another and played with their masks on with no complaints. They even matched unplanned. Hopefully we can schedule more time for the two of them to get together.
X-ray shunt series- Look at my big boy during his X-ray shunt series. This requires several x-ray images in multiple positions. Rayden is a pro at this so no tears here as well! He had to take his mask off because it interfered with the images. 
Renal Ultrasound and labs- Here again, not Rayden's first time. He is very familiar with this exam. He doesn't like the gel on him and wanted to hold my hand again, but no tears. The only time he cried all day was during the blood work. I try to prepare him for everything so he knows what to expect. I kinda left this part out until the last minute. Of course, when I told him he quickly told me he didn't want to do the blood work part. I am very proud of how he handled it though. They had to stick him twice. He kept saying "Take it out!" and "Stop!" but he did very well. We met with Dr. Ross over tele-medicine for the results. His blood work looks good. She said his ultrasound was a little concerning though. It revealed that his kidneys are growing and look normal but they are a little more echogenic than they have been in previous studies. In an ultrasound the kidneys should be about the same color as the liver. If they are whiter they are echogenic. Echogenic kidneys can be a normal variant but can also indicate an underlying kidney disease. She wants to send him to the pediatric nephrologist to check this. She doesn't feel like its urgent because his creatinine levels in the labs were good. He was followed by a nephrologist when he was younger because his kidneys were not producing the hormones to regulate his blood pressure. He was on medicine for a while but it finally resolved itself. Maybe this will too. Dr. Ross also wants to do a urodynamic study soon to discuss his options for bladder continence surgery when he turns 7 or 8 years old. 
Corona Virus (Covid 19) has ruined the end of Rayden's final year in Pre-K. Although, I have enjoyed this one-on-one time with him, I know how much he really needs to be in a school environment.
Rayden recently got approved for Speech Therapy to work on pragmatic thinking and social interactions. He is enjoying working with Mrs. Pam, even if it is on-line. 
We also continued Occupational Therapy with Mrs. Laura. Since this is also on-line I have to be the facilitator, get everything together and keep Rayden working. It's been a new experience for me but I enjoy spending this time with him. It also opens my eyes to ways I can help him better. 
