December 26, 2020 "Christmas Break"

Mom and Rayden created a gingerbread house. 

Rayden got a truck with a dump bed. 

Twinning brothers. 

It actually snowed a little on Christmas Day.


 

December 2, 2020 "Spine MRI"

Symptoms that made us call neurosurgery. 
1-Rayden has been falling a lot in the past few months. He is using his walker all the time at school. His PT even noticed his increasing weakness. 

2-Even though we have been using the peristeen for bowel clean outs nightly for the past 3 1/2 years, it's not working anymore. 

3-His toes are curling and his legs are turning inward more causing little blisters on his ankles. 

4-He is complaining of pain in his legs and sometimes 'tickling'. This complaining has increased. 

5-He screams that I am hurting him when I touch his feet. 

6-He started to walk one morning and his knees buckled with every step. He was beyond weak that entire day. His legs even pointed outward prompting him to ask what was wrong himself! 

MRI-December 2, 2020

We left at 8:30am because Rayden's appointment was scheduled for 10:30. Of course he hadn't eaten anything since 6pm the night before. As we sat in the hall away from everyone else, Rayden couldn't help but notice all the people going by with their lunch. We tried to keep him distracted by playing with a few toys from his bag and looking at pictures and videos on our phones. After two hours we were all getting a little antsy. They finally called Rayden back around 1:00! Even though the hospital recorded in his chart that he had a bad reaction to propofol after being on the ventilator from his seizure, the anesthesiologists disagreed. Because he had propofol before surgery in the past with no reaction, they thought it was a combination of all the medicine given in the ER and the seizures, not the propofol. At 1:45 they finally gave him versed to calm his nerves. 

He actually started asking to ride in the wagon so they wheeled him down to MRI at 2:00. He didn't seem to mind when they placed him on the table. One of the doctors even gave him his phone playing Blippi. But when they came toward him with the gas mask he started screaming and crying. I guess the versed didn't work as good as we wanted. It didn't take a minute and he was out. They informed us that it would only take about 45 min to do the scan and he would be back upstairs in post-op. Michael and I waited and waited out in the hallway. I went to the desk and reminded them that he was suppose to see the neurosurgeon to reset his shunt before they leave. THREE hours later they finally called me to go in there. Melody, from neurosurgery, was in there already. She informed me that his scans were not uploaded yet so they would call me tomorrow with their findings. 

Rayden finally started coming around but his speech was slurred. That worried me so much because it reminded me of his seizures. Needless to say, we didn't leave until 7:00pm. We ended up eating a convenient store hot dog and Doritos in the van on the way home (what a great dinner)! 

What is a tethered spinal cord?

A tethered cord is a spinal cord that is pulled down and stuck, or fixed, to the spinal canal. The spinal cord normally floats free inside the spinal canal. If the spinal cord is stuck, it will stretch like a rubber band as a child grows. This can lead to possible nerve damage, pain and other symptoms. In most cases, the condition becomes worse over time. 

Tethering at S1

Results-December 3, 2020-Melody called with the results from Rayden's MRI. She stated that Dr. Elton and his associate saw that Rayden's spinal cord was indeed tethered at the S1 level. This explains all the symptoms we are seeing. They also saw a 'wispy' area higher up in his spine. Dr. Elton called it a 'dilated central canal'. The radiologist identified it as syringomyelia at the C5-L1 levels measuring up to 3mm in transaxial dimension. He believes it is fluid in the central canal related to pressure or tension on the cord. He thinks that once he releases the tether at the bottom which is causing all the tension and pressure, the fluid will dissipate. They plan to do a follow up MRI a few months after surgery to verify if this happened. Surgery is scheduled for January 15.

Dilated Central Canal from C5-L1. 
This picture just shows a little of it. 

December 23, 2014

We have been seeing more good days than bad so I scheduled a tele-visit with Dr. Elton this morning. He said this is normal with tethered cord. He explained that if we wanted to wait and watch a while he understood but he would consider Rayden a 'more urgent' case and would like to get this corrected sooner rather than later. He says that the surgery can resolve pain but once the weakness and loss of function happens those things are gone forever. He explained that he expects Rayden's surgery to last anywhere from 2-4 hours but he really won't know until he gets in there. He expects Rayden to be in ICU overnight then moved to a regular floor for 3-6 days. He will need to lie flat for 2-3 days to prevent any CSF leaking through the incision. He is at moderate risk for this happening and if it does he will need to go back into surgery to close it up. Once home he would have 2-4 weeks with minimal activity before being released to normal activity. 

November 12, 2020 "Urodynamics Study"

A urodynamics study is a procedure that looks at how well the bladder, sphincters, and urethra are storing and releasing urine. It focusses on the bladder's ability to hold urine and empty steadily and completely. It can also show whether the bladder is having involuntary contractions that cause urine leakage.  

Rayden has had a couple of these tests in the past but his last one was at 2 1/2 yrs old (2017). Now he is more aware of what is going on so I knew this wouldn't go so well. Daddy came along to help keep him calm. We even brought Rayden's favorite toy, fisher man, for comfort. The procedure is such a terrible process. They place little sticky monitors all over your bottom and lower belly. They place two catheters into the bladder. One is to fill up the bladder with blue liquid and the other to measure the pressure in the bladder. They place another catheter in the back passage which allows the pressure inside the bladder to be compared with the pressure outside the bladder. I was already sweating bullets in the led vest but then I got really concerned because the technician was having trouble getting the catheter to pass through the sphincter. He asked the other person to go get Dr. Ross but as soon as he left it passed through. Once the catheters are in the correct position, fluid runs into the bladder at a controlled rate. During this time the technician is collecting data on the computer, taking pictures with the x-ray machine and looking for leaks. Rayden was a trooper although he grasped that fisher man with all his might and continuously said "that hurts" when the technician went down there, even though he wasn't touching him. 

Results: Upside--His kidneys and bladder pressures are good. His bladder actually held a ton more liquid than the doctor even expected. 

Downside--Although the bladder is healthy and can hold lots of liquid, it doesn't squeeze it all out at one time. His sphincter muscle, which is suppose to be tight and hold in your urine, is weak so he can't hold a full bladder from leaking. He actually began leaking at only 46cc, which is only an 8th of his bladder capacity! Catheterizing will take out all the urine but as the bladder begins to fill back up, the sphincter will continuously allow it to leak. Therefore he would not be dry between catheterizing even if we did it every 20 minutes. Dr. Ross says we have three choices: 1-continue in diapers, 2-bladder neck sling/mitrofanoff and mace surgery, or 3-when he turns 18 he could have surgery for an artificial urinary sphincter but they don't have this for children. She also mentioned that although the pressure on his bladder is safe, it may not be good enough for the surgery needed to make him continent of urine. Therefore she believes he may need a bladder augmentation where they make the bladder bigger. It can be rather dangerous because of the long term effects. Therefore she would recommend the bladder neck sling and mitrofanoff surgery for now and hold off on the bladder augmentation. She mentioned we may need to do that later down the line if it doesn't work. But Rayden has to be mentally ready for all of this. He would have three tubes sticking out of his belly for six weeks and then he would have to place tubes in those holes to flush his kidneys and bowel for the rest of his life. 

Because his kidneys and bladder are safe and functioning so well, Dr. Ross doesn't really recommend the surgery right now. It would be more about lifestyle for him, not life threatening. There are so many complications that aren't really worth the trouble since he's doing so well in diapers. Michael and I agreed. These surgeries are a little too invasive for us right now. Maybe in the future when HE is ready to do this to his body. 

Although he can't use the bathroom like other people, it certainly doesn't make him any LESS of a person. He is God's masterpiece. He is fearfully and wonderfully made and we love him just the perfect way he is!!

October 24, 2020 "Rayden's 6th Miracle Day party"

  

Due to Covid, I didn't think we would be able to have a celebration this year. Michael and I decided to have a super small get together. We had it outside and all the food and drinks were individual servings. Even though it was small, Rayden had a LARGE time. The weather was magnificent and his best friends came to play. Rayden, Maylen, Harrison, and Ava Troy had a ball riding his truck and tractor, playing in the sandbox, and play house. 

Rayden knew exactly what he wanted at this party. He wanted a construction theme with a piñata and real construction trucks to play on. Even though we didn't get the real construction trucks, the piñata was a hit!  

October 19, 2020 "Jack-O-Lantern"

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.  

October 1, 2020 "Second seizure episode"

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. 

September 29, 2020 "Lost first tooth"

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.  

September 21, 2020-First day of face to face Kindergarten

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. 

September 3, 2020 "Neuro-opthalmologist answers"

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 27-28, 2020 "There's no place like home!"

THERE'S NO PLACE LIKE HOME! 

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 25-26, 2020 "Seizure recovery"

6:32am

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.

August 23-24, 2020 "Seizure"

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.

August 17, 2020 "Kindergarten"

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.