August 28, 2023 "Second Grade"

This year Rayden is in a Self-Contained Class for Exceptional Children. There are only 8 students in the class. His teachers are Mrs. Lea Bennett and Mrs. Ellen Blackmon. I pray Rayden will be able to get the one-on-one attention he needs to grow academically. Of course, he has an IEP with many accommodations in place. He will continue to receive Physical Therapy, Occupational Therapy, and Vision Therapy at school as well as private OT, VT, and Karate. I work with him nightly on sight words, basic phonics, handwriting, comprehension, and mathematics. Rayden is super bright. He has more common sense than some adults I know, and a better vocabulary than most kids his age. I just pray he has reached a point where academics start making sense and he is able to retain information. I have no doubt that Rayden will grasp reading. He just needs a little more time. Rayden is fearfully and wonderfully made and God has big plans for him. 

August 11, 2023 "New AFOs"

 

Rayden's Orthodist, Bob, decided to change his set up to some Custom Floor Reaction AFO's with side elements instead of the carbon fiber ones. The twister cable is no longer attached to his shoes. It is attached to the AFO allowing him to wear store bought shoes. Originally, he was going to get black, but when Bob found out they had camo he knew Rayden would love that. He also says these are so sturdy that Rayden will not be able break them. We shall see! 

Rayden was thrilled to choose his own shoes at the mall. He chose a pair of Sketchers that look like a Nintendo Switch and another pair that light up with green lights when he walks. It's amazing how well they slide right over the AFOs. 

It actually took Rayden several days to get the hang of walking in them. Everything was different; the way his foot planted, the weight of the AFOs and new shoes, and the pressure points on his legs. One thing we noticed right off the bat was how long he could stand in one spot without swaying back and forth to maintain his balance. His knees were actually straight instead of slightly bent as well. 

July 27, 2023 "Spina Bifida Clinic"

Asleep during renal ultrasound

Spina Bifida Clinic

    BMI- 18.91 (89th percentile)

    Weight- 73 lb. (86th percentile)

    Height- 4'4" (68th percentile)

We saw Dr. Theodore Yip for his mobility check up because Dr. Alexander was out sick. He completed the school forms regarding Rayden's emergency epilepsy medication, bathroom needs, and physical limitations. His biggest concern was Rayden's BMI of 89th percentile. Children whose weight and height exceeds the 95th percentile are overweight, and those who fall between the 85th-95th percentiles are of concern. Dr. Yip would like to see Rayden below the 50th percentile so he is making a referral for a video visit with a Nutritionist. Children with SB usually grow at the same rate as other children but they are not as active due to mobility limitations. At least half of children with SB are overweight by 6 years old. This can cause greater health problems. Mainly, it makes it more difficult to move around and maintain balance on weak legs and feet. It can also put more pressure on the skin causing it to breakdown. Looks like we have some work to do. 

Two toned kidney. Dark/light

Dr. Jada Dillner, Pediatric Urology PA, discussed the results of the renal ultrasound from today. His kidneys look normal but are showing some different color patterns so she wants to get updated blood work. Wendy said she would request the special team ahead of time so we don't have to fight them about his tiny veins. His bladder wall is thickening and there is minimal trabeculation, which are both normal for neurogenic bladder. Since he hasn't had a urodynamic study in 3 years, she would like to schedule one soon. We have been considering the MACE surgery in the future to help with flushing the bowels, so they need to decide which surgeon may need to use the appendix the most, or if they need to combine surgeries. We are switching to adult sized catheters for the Peristeen as well. 

Dr. Narotam, Pediatric Orthopaedics, discussed Dr. Vergun's plan for surgery when he is closer to 10 years old to straighten his legs and get him out of the twister cables. Although he found no curvature of the spine, he is going to continue to monitor him closely because boys tend to start showing signs of scoliosis between the ages of 10 and 12. His surgical scar is well-healed with no erythema or swelling. There is some slight prominence in the midline lumbar vertebral area where there is a slight drop off without significant asymmetry. The musculoskeletal exam shows hip abduction is about 30 degrees on both sides. The internal rotation differs though. Right is about 90 degrees versus 60 degrees on the left. His knee flexion contractures are less than 5 degrees on the right and completely absent on the left. He rests on the heals on both feet when standing and walking without his AFOs. Even though we have always done it, Dr. Narotam reiterated that we hold his hands when he is walking without his AFOs, like after a shower or getting out of bed. This can only be done for short distances. He noticed he is walking on the inside of his right foot and recommended his new AFOs go completely around the ankle for more support. He would like to do a video visit after we get his new braces just to see how they fit. 

Dr. Hildebrand, Neurosurgeon, discussed Rayden's MRI from today. His new, nonprogrammable delta 1.0 valve is working properly. The MRI demonstrates stable, well decompressed ventricles. She briefly discussed the process for epilepsy surgery should this be required in the future. 

Ice cream reward

July 13-19, 2023 "Myrtle Beach"

Rayden thoroughly enjoyed our time at Myrtle Beach. He loved digging in the sand, and looking for shells. We actually found 3 shark teeth. The resort had 2 lazy rivers and 4 swimming pools. It also had an amazing restaurant where we enjoyed breakfast most mornings. We went to Dave and Busters to play arcade games, and The Track Family Fun Park to ride go-karts and blaster boats. We went to three different evening activities, The Charles Bach Wonders Magic Show, Riga Tony's Murder Mystery Dinner Show, and the Alabama Theater. Rayden's favorite was the magic show. He literally sat on the edge of his seat with his mouth wide open the majority of the show. I was even called to the stage for some tricks. The magician made my watch disappear. He was amazing. Michael and Papa took Rayden fishing one evening. He was able to catch two little sharks. He was thrilled. I'm so thankful we were able to spend this family time together. 

 

July 13, 2023 "Epileptologist"

Our appointment with Dr. Qian-Zhou Yang, Pediatric Epileptologist at UNC, was extremely informative. It took over an hour because she was very thorough, which we appreciated. She reviewed SOME of his complex medical history and even took the time to watch the short video clips of his seizures. In her little exam she was quick to notice that his right eye was his dominant one even though he is left handed. She confirmed his diagnosis of poor peripheral vision and his left eye turning inward. As she viewed his MRI's and EEG's on the computer, she pinpointed and explained everything alarming. She pointed out the large, white area of hydrocephalus, which we have seen numerous times before. Then she pointed out the gray spots both inside and outside the white area. This is polymicrogyria, which I had never seen. They are scattered all over his brain but more being on the left. The white area should not have ANY gray spots in it. She said they believe the gray areas are what seizes. Since there are so many gray areas in his brain it will be very difficult to pinpoint exactly where his seizures originate. To complicate things even further, one gray dot could be misfiring and soon the others will decide to copy it, like the old saying "one bad apple can ruin the entire bushel." 

The language center is usually on the left side of the brain. Since he is able to talk just before he has a seizure, this makes her suspect they begin in the right hemisphere. His eyes go the left during some of his seizures which is a second reason for suspecting onset in the right hemisphere. She said all seizures are like sparks that can turn into a fire. So if he has little sparks they are small seizures from one area of the brain. A full body convulsion seizure would be the fire, meaning it has spread into larger areas of the brain.  

She concluded that his seizures are likely focal onset with secondary generalization. However, with diffuse polymicrogyria and multifocal sharps there are many potential culprits. His current medication, Lacosamide, is a good choice for focal seizures (one area of the brain). Since he has multifocal (many areas of the brain) she believes he needs a low dose of a broader spectrum medication like Zonisamide as well. If he has any breakthrough seizures while taking these two medications, she recommends admitting him into the hospital (Phase 1) for about a week. During this stay he would be attached to the EEG, taken off his medication, and monitored by continuous video in hopes to capture and record seizures. She discussed the many other phases needed before they would consider epilepsy surgery. 2-PET CT with sedation, 3-MRI brain with and without contrast, 4-Resting state functional MRI brain, 5-Neuropsychiatry testing before and after surgery, 6-Neurosurgery appointment, 7-Stereo EEG hospital stay (implant probes in brain) to record more seizures, 8-Recommendation for epilepsy surgery. There are three types of epilepsy surgery; laser therapy, neuropace implant device, and resection. It sounds like a long, tedious process but they want to be as precise and accurate as possible in finding the small area of brain where the seizures are coming from. Seizure networks are like tumors. Over many years, they settle into the brain and become harder to control. They also spread to other irritated parts of the brain. Usually, the earlier a child has epilepsy surgery, the more likely they will have a seizure free outcome. Younger children also recover more quickly from brain surgeries than adults. Please help me pray that together, these two medications will keep him seizure free so he doesn't have to go through all of that!!! 

June 19, 2023 "Seizure #12"

8pm, Our long day was over, and our evening routine was well under way. Rayden was on the couch preparing to get in the shower when, all of a sudden, he wailed in pain. I looked over to find his hands on top of his head as he wailed again. I asked if he was alright, but he didn't answer. I immediately jumped up and ran to his side. I quickly realized he was having a seizure when I saw the glaze in his eyes. He stiffened up, closed his eyes, and began choking on his saliva. I grabbed my phone to start a timer and moved the sofa pillow so I could lay him on his side. I called Alex on his cell phone because he and Michael were in the garage. When he answered, I gave one remark, "Rayden, NOW!" They were by my side in one second. Michael got the emergency medication, while Alex began to monitor Rayden's breathing. I continued to watch the timer and reassure Rayden that he was alright. He never stopped breathing this time, although it was very shallow with long pauses in between. Around the 3 min mark, his eyes began to blink and open a tiny bit. He was shaking his head to my questions and looking at the person I asked him to find. He wanted to go to sleep but I needed to know he was alright first. We asked him to count to 5 and tell us his entire name. He was able to do that so I allowed him to go to sleep on the couch while I sat right beside him for the next two hours.  

June 21- Dr. Carolyn Zook-Lewis, Pediatric Neurologist 

Studies suggest that medicines fail to control epilepsy in approximately 20-25% of children. When a person has failed to stay seizure free with two anti-seizure medications they call this drug-resistant epilepsy. It is then important to be seen by an epileptologist to evaluate why, and if there are better treatment options. Rayden has already maxed out one medication and is now having break through seizures on the second. Dr. Zook-Lewis referred him to an epileptologist to review his case. 

June 13 and 15, 2023 "Orthopaedic and ENT Surgical consults"

 June 13-Dr. Anna Vergun, Pediatric Orthopaedic Surgeon

Right Leg- Rayden has external tibial torsion in his right leg. He also has some forwarding residual club foot countering the external twist, causing the fibula bone to stick out of the back. The bone is very prominent making a curved look in the back of his ankle. At this time, we are not doing anything to correct this. 

Left Leg- His left leg has NO external rotation so it's hard to make the joint move and stay forward. This is why his left leg rotates inward when he walks. We are currently treating this with a twister cable attached from his left AFO to a hip belt. 

-The surgeon recommended working on flexibility and stretching external rotation of his hips on the left side. She recommended corrective surgery when he is almost finished growing to prevent stunting the growth plates, around 13 years old. 

June 15- Dr. Austin S. Rose, Pediatric ENT

Rayden was diagnosed with strep throat 4 times in the past 4 months so Dr. Mary Ann Chiodo, Pediatrician, referred him to the ENT for possible tonsil removal. Taking into consideration that there has been an unusually high volume of strep this season, as well as Rayden's significant surgical history and recent seizure episodes, the surgeon recommended watchful waiting for additional strep over the next 1-2 months. Should episodes persist, he recommended performing a tonsillectomy and adenoidectomy in the near future. We found it admirable that he didn't want to put Rayden through another surgery when he had every excuse to do so. 

June 7, 2023 "First Grade Awards"

First Grade was a BLAST!

Rayden made lots of friends this year but his favorite ones to play with were Skye, Makenley, Amy, Rebecca, and Arthur. They included him and didn't treat him any different. He loved PE, Art and Music. His teacher, Mrs. Sarah Gutierrez, was very loving and caring. He worked very hard to earn two desk pets (🐷 and 🐸) with food (🍓 and 🟠). Every morning he would wake them from their sleep inside his desk to sit on top for the day while he was there. He was serious about taking care of them. 💙 He completed all his homework and recorded over 150 books in his reading log! At the Awards Assembly Rayden received a medal for the 100 Book Club, and a certificate for Student of the Month for Courage. We are so proud of his hard work and determination. 

 

May 10, 2023 "Special Olympics"

Rayden was very excited to be an athlete in the Harnett County Special Olympics this year. He competed in two events, the Tennis Ball Throw and the 10 Meter Assisted Walk. He was the only participant in his heat that competed solo. This made us even more proud of his 2nd place win. By the time the Tennis Ball Throw came around he was really tired and finished in 5th place. He was so proud of his medal and ribbon. We were super proud of him as well. 

April 20, 2023 "First Grade Field Trip"

Rayden was very excited to go to William's Produce for his first grade field trip. Mr. Aaron went along to help with Rayden's mobility needs and Alex even came over for about an hour. I enjoyed watching him play with the music wall, try to throw the football through the tire, ride on the pipe roll, take a barrel train ride, enjoy the jump pad, blow giant bubbles and climb the tractor slide. He learned a little about sweet potatoes, tomatoes, chicks and rabbits. We took a wagon ride through the fields, picked strawberries, and finally had a picnic lunch. It was a beautiful day to make memories. 🍓

April 14, 2023 "Seizure #11"

At 6:35am we were awakened by Rayden sitting straight up in his bed, reaching into the distance, sporadicly coughing, and repeatedly saying "ouch". Alex got to him first, followed by Michael and myself. He was able to reach for each of us and respond a tiny bit with shaking his head, but not speaking. We saw the daze in his eyes as they moved back and forth. I began videoing while Michael got the emergency medication. When he began this weird burping/breath and drool we laid him down on his side and kept talking to him. He began shivering all over, twitching, and taking weird breaths. His eyes kept going back and forth and he continued the funny swallowing like burping. After 3 minutes I administered the Valtoco. He clinched his lips and stopped breathing. Michael called 911 as Alex kept rubbing his chest. For 2 whole minutes I was yelling "breathe!" while Alex and I both continued sternum rubs. We even tried to give him a breath, but his teeth were clinched and Alex couldn't open his mouth. He just gave him a breath over his nose and mouth. Finally, he coughed and began taking shallow breaths. The paramedics arrived and did a complete workup. BP 112/60, HR 115, RR 16, BGL 109, Temp. 97.6. He was answering their questions without slurring his words. We elected to keep him at home instead of transporting him to the hospital. While Rayden slept on the couch, I sent emails to his Neurosurgeon (Dr. Scott Elton) and Neurologist (Dr. Carolyn Zook-Lewis) at UNC. Dr. Elton's Nurse Practitioner advised us to go to UNC ER for a complete workup if we were still concerned. Of course, he could always be having another shunt failure, but it could just be another seizure (as if that's not bad enough)! Who knows? I sure wish Rayden's health care wasn't such a guessing game. Dr. Zook-Lewis decided to increase his seizure medication from 8ml to 10ml. Rayden slept until 12:30. When he woke, he was hungry and back to himself. Praising God for all His blessings. 

April 4, 2023 "Miracle League"

The Miracle League

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. ⚾

             

March 15, 2023 "Neuropsychological Evaluation Findings"

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.

March 20, 2023 "Visual Therapy"

Vision Therapy 

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. 

March 9, 2023 "Post-op at UNC"

 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). 

February 14-18, 2023 "Surgery #19, Shunt Malfunction/Replacement"

(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!!