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 has been counting the days until he could play baseball again. We decided to join The Miracle League of Dunn this year because Rayden was too old for T-ball and we didn't think it was safe for him to play coach pitch with his peers. We didn't really know what to expect. We wondered how he would accept a team with players of all ages, and each player having a buddy by their side. Rayden never ceases to amaze us, though. He didn't say one word about teenagers playing on the team. He was so thrilled to be back out there. Having a buddy to talk to in the outfield sure made Rayden happy. (He LOVES to talk.) He was all smiles after each game and told every single person he met the next day about how he hit the ball. He was sure to invite everyone to his games as well.
Special thanks to his buddies during the games:
1. Captain Matthew Smith of Dunn Police Dept. 4. Jarius Brown of Omega Psi Phi Fraternity
2. Ryan Tart of Triton High School Football Team 5. George Adler, Planning Director-City of Dunn
3. Brittany Staves of Campbell University Basketball 6. Sean and Felix of Campbell University Soccer
We appreciate all the fans that came to support this wonderful team and our one-of-a-kind Miracle, Rayden.
Mom, Dad, Alex, Justin, Granny, Nanny, Papa, Uncle Gerome Heath, Aunt Patsy Lee, Angie Parker, Tucker Wright, Mary Beth & Skye Canterbury, Michelle Jackson, Jeff Wilson, Stephanie, Case, & Cayden Bass, Carol & Harrison Raines, and Kelly & Jackie Morris.
The last game, Rayden decided to be a 'switch hitter'. His first time up to bat he hit right handed like he did every other game. Second inning, he decided to switch up and hit left handed. He actually hit the ball both ways pretty good! It amazes me how he can do things with both hands. Most people are either left OR right handed not BOTH. He also wouldn't run to first base until he put his bat away! He took care of his equipment, haha. The coaches presented each player with a medal after the last game. Rayden was thrilled and so proud of himself. He began showing it off immediately. He even took it to school the next day and shared it with his classmates. We are so proud of him for being such a wonderful sport, following the rules, taking turns, being respectful, meeting new friends, and standing/walking for over an hour even though it was hot. He enjoyed ever minute of The Miracle League games and can't wait to play again next season. ⚾
Neuropsychology evaluation 3/9/23 Dr. Hannah Allen
Rather than discussing every score, the following is a synopsis of the most important findings.
Compared to the same aged peers, Rayden's general neuro-cognitive functioning is developing at a slower rate globally. Rayden's intelligence is in the borderline impaired range, with stronger verbal than visual skills. Language functioning and emerging executive functioning was borderline to mildly impaired for age.
Rayden's academic skills are generally within expectations based on his demonstrated cognitive skills, with the exception of math computation. Reading and conceptual math skills were consistent with intelligence; however, he is making slower progress with computation, which is more abstract and requires written responses.
Rayden learns best when information is presented verbally, but without extraneous language. He demonstrated better rote memory than story memory, suggesting he may get overwhelmed with too much language. Succinct instructions and explanations that can be repeated easily if needed are likely most efficient in helping him learn. Rayden also has a brief attention span so that new learning sessions should be direct and brief with a break before returning to cognitive demands.
From parent ratings and interview, symptoms of anxiety as well as ongoing ADHD are impacting his functioning. The level of worry fell in the 99th percentile range for his age.
Areas of significant strength include motor reduced adaptive skills, behavioral compliance, and social skills. Rayden presented with generally well understood developmental needs. His presentation is consistent with a Major Neuro-Cognitive Disorder due to Spina Bifida, as well as Generalized Anxiety Disorder. His profile on testing is notable for stronger language than visual spatial processing, well documented as an expected pattern for children with Spina Bifida.
Notable results include his unique memory profile – that Rayden learns best verbally with rote, repeated information. He can become overwhelmed easily with too much content and will learn best when mastering smaller chunks of information. Tasks that require coordination of different cognitive skills, like generating a word and writing it, are more difficult for Rayden. He requires specific adjustments to his educational environment to learn. Additionally, symptoms of inattention, hyperactivity and anxiety are also likely impacting his ability to learn at his best level. Rayden has strong social and adaptive skills, as well as parental and educational support. With some additions to educational and community support, he is expected to make ongoing progress.
Educational Recommendations:
Continue to participate in the formation of an Individualized Educational Program and collaborate with his teachers to support his educational goal progress. For Rayden to meet his full potential in terms of academic achievement, he requires the following:
Please provide a learning environment with decreased distractions (visual and auditory). Rayden is very susceptible to extraneous noise visually and auditorily in his space, which will decrease his attention to task and impact learning.
New learning occurs best in with mastery of small increments and help generalizing those mastered principals to other areas.
Very careful progress monitoring is recommended so that new strategies are trialed if he is not making progress with current methods. Progress may be checked monthly to ensure he is responding to interventions.
Incorporation of all recommendations from VI specialists
Decrease fine motor demands in learning. For example, he can choose letter forms or say them verbally in place of writing letters. Requiring him to write numbers and letters will greatly decrease his available attention to talk.
With this information, we decided to request a one-on-one para-professional for Rayden at school.
Rayden was seen at Triangle Visions Optometry in Cary on December 27 & 30, 2022. He had a range of visual efficiency and processing evaluations. The purpose of the evaluations was to determine if problems with visual information acquisition and processing skills may be interfering with Rayden's ability to achieve his full potential for learning within the academic setting and overall development. Rayden's visual acuity is below expected both in near and distance. Dr. Brett Miller recommended wearing glasses to promote the best clarity of vision possible at school. Rayden continues to demonstrate a mild-moderate degree of intermittent esotropia in the left eye. The testing indicates that he does not see double, but he suppresses vision received by the left eye when the eye deviates. He seemed to have inaccurate eye movements when isolating targets used in a non-reading task. His fixation was poor and he had some difficulty moving the left eye into left gaze. Most of vision takes place in the brain. While the eyes collect visual information, the brain processes that information and makes it meaningful to us. The brain is then able to drive motor movement, make decisions, and coordinate vision with our other senses. Rayden's visual perceptual skills and visual memory scored at/or below that of a 4 year old, therefore she recommended visual therapy once a week for 45 min. per session. Vision therapy is an optometric specialty designed to stimulate the sensorimotor connections between the eyes, brain, and body. It is individualized to fit the visual needs of each patient. We have been waiting for 3 months for our insurance to approve it. He finally began today. 💗
To my knowledge, there are only three places in NC that offer Pediatric Visual Therapy; Raleigh/Cary, Wilmington, and Charlotte. Even though we will have to drive an hour there and an hour back once a week, I am willing to do WHATEVER it takes to help Rayden achieve his potential.
Our day began at 6:30am with a long drive to UNC for multiple appointments. 1-Neuropsychological Evaluation with Dr. Hannah Allen. This took two hours. (Results will be discussed next week.) Rayden enjoyed riding the shuttle from the ACC building to UNC Children's Hospital. He had 2-X-ray shunt series, and 3-Rapid sequence MRI. Rayden didn't even need Momma during any of these exams. He knew exactly what to do and wasn't scared at all. He is growing up so fast. We also went upstairs to the 7th floor to visit his nurses and get the Beads of Courage he has earned from 4-Child Life. We rode the shuttle back to the ACC building for 5-Neurosurgery post-op appointment. Dr. Elton said his shunt looks great. He went over Rayden's symptoms and explained how lucky we were to be that close to a Children't Hospital with a Neurosurgeon. He even spoke about how children with Spina Bifida have always scared him with shunt failure. The headache and vomiting is one thing, but SB kids have brain stem issues that can quickly become critical. He said the CSF can build up so fast that it puts pressure on the brain stem and they stop breathing, which is what Rayden was doing. This can also happen to people without SB, but it is so far down the symptom line that you are already getting treatment before this happens. The time-line is accelerated in SB kids. He said we were one step away from fatality! He told me that Rayden's shunt failure will progress the same way each time, so we do not need to wait if he begins showing any symptoms. He has to go back for follow-up in two months. Rayden was exhausted and slept the majority of the way home. We arrived home around 7:00pm.
They were able to download the MRI scans from Orlando to Rayden's chart. These comparison photos are before surgery in Orlando (2-14-23) and after surgery in NC (3-9-23).
(2-13-23) Rayden woke up complaining with his 'shunt hurting'. After eating breakfast at the hotel in Savannah, Georgia, we stopped for gas and gave him some Motrin. Rayden actually slept another hour or two on the drive. We arrived in Orlando, Florida around 1:30pm for a long awaited Disney trip. We checked into the Pop Century Resort and spent the evening in Disney Springs. Rayden was complaining off and on but it didn't really stop him.
(2-14-23) Rayden woke up around 1am SCREAMING in pain!!! He would stop breathing for a long time, then gasp for breath and yell in agony. It resembled someone with sleep apnea. This continued for two more hours while I TRIED to get UNC on the phone. I just wanted to know where to find the nearest Pediatric Neurosurgeon. (No one would ever call me back and I called five times!!) Of course, I did a google search. This led me to Arnold Palmer Children's Hospital, but I must have gotten the wrong number because that person was telling me it wasn't an ER and I had to make an appointment in the morning because he would be considered a new patient. Ugghh!! I honestly don't know what I was doing wrong. It was 1:00 in the morning. I was in a strange place. I was in a panic. Who knows??!!
We can't normally see Rayden's shunt because his hair covers it. As he was squirming in the bed, we could see his shunt bulging through his hair and his neck was swollen so large that we couldn't even see his tube. Not really knowing exactly where we were, I called the front desk of the resort to call 911 for us. The Reedy Creek Fire Department paramedics and the resort managers arrived at our room in no time. I told the paramedics he needed a neurosurgeon and they got us to Arnold Palmer Children's Hospital within 20 minutes. Rayden began vomiting profusely in the ambulance. That consumed the entire ride preventing the paramedic from doing anything else.
We were very impressed with the immediate attention of the emergency room staff. They did a rapid sequence MRI and shunt series Xray right away. Rayden didn't even seem to care what they did to him. He was in so much pain. Even though we had the lights off, he wanted a washcloth over his eyes. He kept saying it was too bright and would scream when anyone took it off. I just wanted them to help him but they wouldn't administer any pain meds until they did a complete shunt work up. After viewing the scans, Sheryl Esmond, PA-C, came in with a sterile shunt tap kit. She didn't even ask permission, she just started opening up the kit. I remember asking her about infection risk and if it was worth tapping the shunt. She looked up at me while putting on the sterile gloves and stated, "We don't have a choice!" Rayden's oxygen level was already dangerously low and he was in and out of consciousness. She actually pulled 48cc of CSF off his brain before Rayden's vitals stabilized and he whispered, "Thank God!" The nurse said 48cc is an astronomical amount of CSF to remove before the patient could get relief. The NS told me they would take him to the operating room soon. There was no question that his shunt was malfunctioning.
Of course, they also had trouble starting an IV (everybody does). When they finally got it started they were able to do bloodwork, and administer zofran for the nausea. They held off on giving him pain meds because as long as he was laying flat, he was alright. We met Dr. Ryan J. Jafrani, MD. He tried calling Dr. Elton because he couldn't view any of Rayden's records through MyChart, but he couldn't get in touch with him. I tried calling Melody (his NP). She stated that Dr. Elton said he would have to defer to the doctor currently treating Rayden because we were across state lines. I didn't expect them the TREAT him, just discuss Rayden's history with the surgeon!! Luckily, I had access to Rayden's MyChart and was able to view all of his previous MRI scans from UNC. Dr. Jafrani felt more comfortable with the procedure after comparing the scans on my phone to the current scans. He felt confident that the distal catheter (tube that travels from the shunt to his abdomen) was clogged and would need to be changed out. He ordered one more MRI before going to the OR.
The entire staff worked so fast. He was in the OR within 3 hours of arriving at the ER! Impressive! Dr. Jafani expected the procedure to last about 2 hours. It actually took 3.5 hours! The surgical nurse texted me with updates along the way. They even called the front desk one time and sent someone out to ask us questions about his previous surgeries and seizure medication. I was very alarmed when a nurse took us to a 'private' waiting room to speak with the surgeon. My fear quickly subsided when Dr. Jafrani arrived with a smile on his face. He said Rayden made it a little challenging. Hmm, sounds familiar!! Just as Dr. Jafrani expected, the existing Medtronic strata adjustable valve was obstructed. He replaced it with a new Medtronic PS Medical Delta 1.0 fixed pressure valve. It will not be affected by magnets! The distal catheter was also clogged. Most of these distal tubes get covered with scar tissue over the years and they can't be removed, luckily Rayden's was able to come out easily. Even though he went to a different area, he did run into some unexpected problems tunneling the new catheter into the peritoneal space. He said there was a lot of scarring even though Rayden hasn't had any previous abdominal surgeries there. This could have been caused by some infection in the past also. Who knows? Leave it to Rayden to challenge everyone!! Dr. Jafrani was able to get through it, but it added another 45 min. to an hour to do safely. He even got another Xray in the OR to be sure the catheter wasn't in a false pocket. Rayden will have a new abdominal incision over his belly button from the new path. He said we got there just in time. Rayden was dangerously sick. Shunt failure can become DEADLY quick and Rayden was right on the cuff. Praise God for his many blessings. 🙏
While all of this was going on, Alex, Nanny, and Papa were at the resort packing our things, canceling reservations, and trying to get our trip refunded or postponed. Luckily, Disney was wonderful to work with. They understood our emergency, refunded our resort stay, and made our tickets useable within the next five years.
(2-15-23) Rayden is in the PSCU (Pediatric Special Care Unit). It’s a step down unit between ICU and the regular floor. He went to sleep about 7:30 last night and didn’t move until they woke him at 5am for an MRI and X-ray series. Although he is still hurting, he’s not in excruciating pain anymore. He is talking a little but won’t move because there are things attached to his hands. (He’s always like that after surgery) He is concerned about his haircut too! Haha. He said he didn’t want his hair looking like Sensei Charles Burrows.
Dr. Jafrani said this mornings MRI revealed dramatically smaller ventricles compared to the pre-operative MRI but it will take a while for it to balance out. Today's goal is to sit up, eat, and ultimately walk to the playroom.
Rayden had a very difficult time sitting up in the bed at first. He got so dizzy and nauseous. He ended up having to lay back down. We were able to get him to the playroom around 11:30. We could tell he wasn't feeling the best, but he sure tried to hang on. His eyes looked glassy and distant. He lasted about an hour and asked to go back to bed. He began feeling worse, complaining with his head hurting. The nurse gave him some Lortab so he could rest.
(2-16-23) This morning he is even worse! He won’t talk, sit up, eat, or anything. (You know that if he’s not talking something is wrong!!) When we raise the bed he screams in pain begging to lower it and starts vomiting. The surgeon said his old shunt must have been malfunctioning for a while and he got used to the gradual increase of pressure in his head. I can’t imagine that pain. Now, the pressure has decreased rapidly causing massive pain when he sits up. They just want to give it time to see if it levels out. My Mommy heart says there’s something more wrong but praying they are right. I feel like they think he’s a normal, quiet, 8 year old boy that is just trying to get attention because he tells them he’s “good” and “fine”, but when they leave he cries with his head hurting. That's why I took the short video clip. When I showed it to the nurse she immediately called the neurosurgery team. They don’t KNOW Rayden! He does not lay perfectly still all day! He can eat like a horse, and talk up a storm. He’s very playful and comical. He will NEVER tell anyone, but me, he’s hurting. He’s the bravest kid in the world! I complained off and on all day because Rayden slept the ENTIRE day minus about an hour in 15 minute intervals. He was mumbling to answer questions and just couldn't stay awake. Around 5pm they decided to take my word for it and do another flash MRI.
(2-17-23) Dr. Jafrani said the plan is to give more time. He doesn’t want to hold us prisoner here in Florida, but Rayden isn’t stable enough to travel to NC. Last nights MRI scans do not indicate over drainage or a bleed. I was able to pull up his MRI scans from December so he could compare them in front of me. They still can't see any of his records from UNC. I have access to his entire life's history on my phone. Invaluable!! Rayden is still in pain especially when the bed is raised. He tolerates the pain when laying flat. Dr. Jafrani said this NEW kind of shunt may not suit him well. So, if this continues today, he may have to change the valve out. Another surgery!!! NO, We need him to turn the corner today and start tolerating the new pressure in his head. We all want the “Old Rayden” back. The one with the infectious smile, addictive personality, sparkling eyes, and comical demeanor.
Hour by hour we would increase his bed incline until about 11am he was sitting straight up. We got him out of bed and sitting in the recliner. He was very dizzy but toughed it out. Around 12:30 we got him into the wheelchair and took a stroll down the hall. He sat up the remainder of the afternoon. He even ate an entire cheeseburger. Around 2:00 our clean-out attempt worked. Rayden felt so much better after getting a sponge bath. By the evening, he finally seemed to be acclimated to the new shunt and CSF flow. He was even walking laps around the hall. Dr. Jafrani was off for the weekend but the new surgeon, Dr. Greg Olavarria, said since this is his first good day after surgery, he wanted to keep him one more night. Hopefully we can start the journey home tomorrow!
(2-18-23) Rayden had a slow start getting out of bed this morning. Apparently changing positions still messes with the pressures in his head. They said this may happen for a while, so he needs to get up slowly. It takes a while for his eyes to normalize as well. He’s complaining with his head hurting some but hopefully Tylenol will take care of that. We were finally discharged around 12:30. We ended up stopping at the GA/SC line for the night. Rayden had about all he could take. Hopefully after a good rest he will be able to continue the journey home. 🏡
Rayden will need to follow up with UNC Neurosurgery in a few weeks for another Xray shunt series and rapid sequence MRI just to make sure everything is working properly.
The lobby of Arnold Palmer's Children's Hospital is absolutely gorgeous. There is a giant, two story castle. People can go inside and sit on benches, and climb to the second story windows. The elevator is actually behind the castle. There are beautifully painted arches and lots of Disney characters lining the lobby floor, hanging from the ceiling, and in the second story windows. The hallway leading to the exit was filled with interactive screens for people to watch Disney films, or learn Disney trivia. There was even a working model train village. We didn't get to see Disney World, but at least Rayden was able to see a spectacular hospital.
I must give a shout out to Alex Bradley. I don’t know what we would have done without him. He comforted Rayden through all his pain, motivated him to get back to normal, and entertained him to lift his spirits. He didn’t wait for a shuttle to bring him to the hospital. He walked every morning to get there early because he knew Rayden needed him. He even brought Michael coffee on the way. He has taken care of everyone!! Packed all our things at Disney, talked to the manager to handle our reservations, drove the car to the hospital, helped Nanny and Papa get into the Ronald McDonald House, carried everyone’s things back and forth, didn’t hesitate to fetch whatever we needed ANY time, and the list goes on and on. He did whatever, whenever, however, for whoever needed it. We are so proud of him. Such a wonderful, thoughtful, young man. We love you Alex.
💙 I must give another shout out to Dr. Ryan J. Jafrani, MD. Not only did he take wonderful care of Rayden, he listened to our concerns and treated us with respect. What impressed me the most was HE HIMSELF, not his PA, or his nurse, HE HIMSELF, actually called me a couple of days after we came home to check on Rayden. He was genuinely concerned for the welfair of his patient, not just the dollar sign he represents. He also said Rayden will always be his patient now. WOW! He only had Rayden for a couple of days and only completed one surgery on him. He has shown more concern than his NS here at UNC that has known him since birth and completed 9 surgeries on him!! Speaks volumes!!
95% of people living with Spina Bifida have neurogenic bowel, the loss of normal bowel function. It is caused by damage in the spinal cord nerves that help control the lower part of the colon. These injured nerves affect the ability of the GI tract to function properly, leading to symptoms of incontinence. We have dealt with this issue Rayden's entire life. The solution for many years has involved prune juice, MiraLax and nightly Peristeen enemas. We have done a very good job for 8 years preventing any rectal prolapse or blockages, but lately our efforts have not been too successful. Dr. Ross said it was time to discuss a surgical option, not only for better function, but for Rayden's independence as he gets older.
We had an initial surgical consult with Dr. Michael Phillips for the MACE procedure. MACE stands for Malone Antegrade Colonic Enema. In this procedure, the surgeon creates a small passageway (conduit) between the skin of the abdomen and the colon (large intestine). This opening would either be at the belly button or over to the right. The passageway can be made two different ways, from the appendix (Appendicostomy) or a small piece of the bowel (Cecostomy).
A tube is inserted in the passageway with a one-way valve. This will keep stool and bodily fluids from coming out from the belly. He can then insert the enema liquid at the beginning of the colon, instead of hte end through the rectum.
There are two types of tubes, the Chait, and the MiniACE.These tubes have a trapdoor that remains on the outside of the abdomen. It is easy to swap between the two tubes if one works better than the other.
The Chait tube is self retaining. It has a long tail that curls to prevent the tube from coming out. This long tube makes it harder to do flushes though. It will need to be changed in the clinic every 6-12 months.
The MiniAce uses a valve that prevents less leakage. It has a short tube to make flushing easier. It uses an inflated balloon to hold it in place. We would deflate it to do the flush and then re-inflate. It would need to be changed every 3 months.
Of course, our biggest concern is what could go wrong.
1. The biggest complication is infection. The skin will be connected to the intestinal tract, so the risk of infection is around 5-10%. In most cases the infection would just be superficial, responding well to antibiotics.
2. The trapdoor could get snagged on a seatbelt, or other things, causing it to get pulled out. A new tube would need to be inserted at the clinic. This makes us worry about his twister cable belt.
3. Long term complications would be if the passageway becomes tight resulting in challenges with tube changes. This would require a surgical revision.
Due to Rayden's past complications, Dr. Philllips recommends antibiotics for 24 hours prior to surgery and after, instead of the normal one dose after surgery. This would be a 2-4 day hospital stay.
I love the way Dr. Phillips talked to Rayden, ultimately it is HIS body anyway. Rayden really didn't warm up to the idea of having something permanently placed inside his body. I know I'll have to explain it to him and remind him of his shunt and tube that have been there since birth. These kinds of decisions are so difficult. Ultimately we want to do what's best for Rayden, making his life easier to manage giving him more independence. Since this is not an emergency we have the luxury of waiting until it is more convenient for our family. So we have time to pray, discuss, research, and decide when the time is right.
All Rayden wanted for Christmas was a long gun that didn't kick like his Daddy's. He called it a "Half-kickin' shot gun". His favorite color is red so this needed to be in the mix. Every single time he told Santa (or anyone else) what he wanted, we had to explain it. Santa got it just right! A red, bolt action, Rascal 22, with a braided red and black strap. It even had a duck feather on the end. He also got some 22 shot shells. When he came into the living room on Christmas morning he went straight to the gun and was tickled to death! He looked around and asked, "Why did Santa bring me all this other stuff?" Rayden is not one bit selfish or stingy at all! He's so precious.
Michael and Papa took him outside after brunch to 'hunt' birds. When he killed one, I couldn't tell who was more excited!! Three days later, Michael took Rayden duck hunting with his new gun and duck calls. We had one happy boy!! 🦆🦆
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.
This year we decided to skip the party and take a trip to Winterfest at Carowinds to celebrate Rayden's 8th Birthday. We kept it a secret from him. That Friday, Rayden and I left school early. That was his first clue that something was going on. When he saw us loading suitcases into the van, he knew we were going somewhere to spend the night. He loves a hotel so that would have been surprise enough for him. When Nanny, Papa and Alex all loaded into the van his little mind was BLOWN! He talked the entire ride to Charlotte, trying his best to talk someone into telling him where we were going and what we were doing. We were lucky enough to get adjoining rooms at a hotel right on Carowinds property. The next day we had planned to attend the Fun Run before Carowinds opened for Winterfest, but it was raining. After breakfast at the hotel, Alex and I took Rayden to get our t-shirts and an impromptu trip to Cabella's to see Santa and pick up a pair of Crocs for Michael.
Rayden is a new member of "A Kid Again", an organization that foster's hope, happiness, and healing for children with life-threatening conditions and their families. They provided tickets for us to attend Carowinds Saturday night. The park was only open to A Kid Again families from 3:00-5:00 before it opened to the public. It felt like we were there with only 300 people. Rayden was able to enjoy quite a few rides before the flood gates opened (pirate ships, roller coaster, mud buggies, bus, and jeep trail blazers.) He wanted Alex to ride with him on every one (no surprise). I think his favorite ride was the front seat of the Scooby-doo roller coaster. He joined along with the drummer boys show and thoroughly enjoyed the parade. We were able to see Santa twice, and take lots of pictures. Santa seemed confused when Rayden asked for a "half-kickin' shotgun". Rayden didn't miss a beat explaining.
We all enjoyed watching the pure joy in his eyes, the sparkle of excitement in his voice, and hearing his sweet laughter. It's true what they say...seeing the world through the eyes of a child is the purest joy anyone can experience.
When we got back to the hotel around 11, Rayden made the most precious comment. "I love you, and really appreciate all y'all have done for me this weekend." I have never heard him say anything like that before. My eyes filled with tears knowing that no one told him to say that, he genuinely enjoyed and appreciated it. 💖
Rayden was asked to ride a float in the Shriner's Fall Ceremonial Parade. He was thrilled at the chance to do something with 'his' clowns. He thought he had to dress like a clown too. He settled for wearing his Shriner's hat and Boo just painting his nose.
The Shriner's children float led the parade with one other family besides us. We rode down the strip waving at everyone. Rayden saw lots of people, but was thrilled when he found Nanny, Papa, and his friend from school out in the crowd. They parked the float right beside the MC of the parade. We were able to watch the remainder of the parade from the float, what perfect seats! Rayden enjoyed shaking hands and giving high fives to all the Shriner's clowns, pirates, animals, hillbillies, etc.
Later that night we were asked to attend the Ceremony. Rayden marched in there like he was the guest of honor. He walked around shaking hands and talking to everyone. When it was time to begin, I had to chase him down and bring him back to the table. Everyone said he is going to be a politician or a preacher someday because he loves to talk and knows how to work a room!! They asked us to come forward and tell everyone our experience with the Shriner's Hospital. I tried to keep it brief but there was so much to tell. 💛
-Referred to Dr. Hannah Allen for updated neuropsychological evaluation.
-Referred to Dr. Brett Miller, Director of Vision Therapy Services. She treats patients with learning-related vision problems and provides vision therapy.
-Curvature of the spine looks good, but slight Galeazzi sign with right knee higher than left. This indicates leg length discrepancy and possible hip dislocation.
-Referred to Dr. Anna Vergun, Pediatric Orthopaedic Surgeon for follow up.
-Prescription for bilateral forearm crutches to build upper body strength.
-Renal Ultrasound revealed kidneys and bladder remain healthy.
-Referred to Dr. Michael Phillips, Pediatric Surgeon, to discuss Chait tube or MACE for bowel plan.
Rayden thoroughly enjoyed spending time with family. Aunt Kathy, Uncle Gary, Carey, and Callie Jewell.
Voting all by myself!
Rayden has been with us to vote a lot but this time HE wanted to actually fill in a ballot. He brought his "identification" and everything. He even wanted his privacy! Look at how he bubbled in EVERY SINGLE candidate! If you know him, then you know he must have been very serious about it to take the time to do that. Priceless!
Yellow Belt Rank in Karate!
Rayden worked so hard to learn his Japanese vocabulary. We drilled and drilled every night for his new rank belt. We are all so proud of him.
Sensei Charles Burrows has the most patience and creative ideas for working with Rayden. He loves Karate! We are so proud of his efforts and determination to work, even though it is challenging for him. 🎗🎗🎗
At 4am I was awakened by Rayden mumbling "What?" twice. Then he began breathing hard and loudly. I walked to his room to find him choking and gasping for breath. I turned him onto his side and yelled for Michael and Alex. When I touched him, it seemed as if his entire body was shivering under the skin. It was a weird feeling and hard to explain. His legs were moving back and forth with small jerks but not violently shaking. He wouldn't acknowledge my questions and his eyes looked glassy and distant. After two minutes, Rayden looked up and said, "Go to bed Alex." We knew then that he was ok. I decided to lay down with him for the next 30 minutes or so just to make sure he was alright. Although all seizures are a serious issue, I'm so thankful that this event wasn't anything major. I just pray that God will continue to keep a hedge of protection over him.
September 28
At 8pm, we were just getting back from my birthday dinner at Nanny's, when Rayden collapsed very hardly in the living room. He falls all the time and doesn't want anyone to help him so Alex and I asked from the kitchen if he was ok. He did not respond. Almost simultaneously, Michael came in the back door and picked him up saying, "No, he's not ok!" Rayden threw up all down Michael's shirt as he started to lay him on the sofa. His eyes were glassy and he had no control of his body. His head was bobbing like a newborn baby. He was slobbering and gagging like he was going to throw up again. Michael took him to his bed to lay him down. He wouldn't respond to our questions. Alex started the timer and we just kept talking to him. After about 2 minutes, he began to mumble but his speech was slurred. We couldn't really understand what he was saying. I asked him to look at Mommy, and he couldn't really control his eyes. I asked him to point to brother but his finger seemed too heavy to lift. After about 5 minutes of this, I decided to give him his emergency medication. He immediately went to sleep. I sat with him for about 3 hours making sure he was alright before going to bed myself. The next morning he seemed fine. Michael gave him a shower and we went on to school.
This seizure didn't happen around his sleep pattern. It resembled the very first one he had back in August of 2020. I asked his Neurologist if the ADHD medication he began 2 weeks ago could have anything to do with it. Dr. Lewis said there is a slightly increased risk for stimulants such as Quillivant to cause seizures. Although, it is felt that the benefit of ADHD medication outweighs the low risk of seizures. She says it may have just been a coincidence and he was going to have a seizure anyway. She believes since he has been on the medication for a few weeks now, it is unlikely to be the cause. She wants to increase his seizure medication from 8.5ml to 10ml twice a day. (It was only 3.8ml 6 months ago!) If he has any additional seizures we will need to talk about another medication.
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