July 22, 2025 "Surgery #21"

We were up and heading to UNC at 4am! Rayden was actually happy to get the tube removed. He complained about it hurting every single day. He even ripped the two stitches out a couple of days ago! We were excited to get the MiniACE but Dr. Phillips said he had to insert the Chait Trapdoor first because it is one size fits all. The MiniACE is more patient specific needing precise measurements. He agreed to measure today and order one for us to try in a couple of months.   

   

As shown in the picture, the MiniACE has an internal retention balloon that is gentle on the intestinal walls as opposed to the coils and exposed interior tip of the Chait Trapdoor. It is also 450% more secure which reduces the risk of accidental pull-outs, of which Rayden is TERRIFIED is going to happen! Tapered tubing, and the apple-shaped balloon reduce the risk of leaks, and the anti-leaking valve prevents back flow of fluids. Patient-specific sizing leads to less movement which can reduce the risk of nerve damage and pain at the site. 

Rayden used to hate when the child life person came with the sedation mask but today he was ready. He chose a flavor to put inside and stickers for the outside. Luckily he was able to find 2 deer. After talking with all the people involved, they took Rayden back around 7:30am. He was just as calm as a cucumber. Around 8:30, Dr. Phillips came out to tell us it went well. I couldn't believe that everything actually went according to plan! Rayden was awake almost immediately because they didn't use Ketamine! He was a little sore but we were able to leave the hospital as planned. 💗

July 13, 2025 "Hands of a Sportsman"

Ron Ussery Youth & Disabled Catfish Tournament  

This was our first time being invited to a Hands of a Sportsman event. This was held in Rockwell, NC (about 2.5 hrs. away) so we got a hotel the night before. The event was held at the Ussery Catfishing Pond. It was a peaceful place with 3 ponds not far from one another. Rayden was able to ride his track chair all over the property with ease. We arrived early and were completely set up around 9am. We fished all day in scorching heat but didn't even get a bite! A couple of children were able to catch a fish, but not us. We learned later that day that there was a tournament held there the night before we arrived! They supplied hot dogs, chicken, drinks, etc. They even had some door prizes and a gun raffle. Rayden won a blow-up kayak back pack. He talked about it being 'the first boat he's ever won' all the way home! 🎣

June 3-9, 2025 "Surgery #20"

June 2-We completed a bowel prep on June 1 and began the second one this morning. We decided to head on to the Ronald McDonald House to spend the night before it started working. We arrived around 4pm, settled in, completed the second half of the bowel prep, spent some time outside on the grounds, and went the toy room to pick out a prize. That's when the bowel prep decided to work! We spent the remainder of the night in our room. Rayden began moaning in his sleep around 1am. I believe it was due to the 4 giant antibiotics he had to take on an empty stomach. 

June 3-We arrived at UNC at 6am. Even though Rayden was quiet, he remained calm and collected the entire time. They wheeled him back to the OR at 7:30am. After sedation, IV, and saddle nerve blocks, the procedure got underway about 8:00. Prior to today, Dr. Phillips had discussed a couple of different ways to create the opening for the flush. (Our first consult was Jan. 11, 2023) He really needed to talk with Dr. Ross, urologist, about her predictions of other surgeries in Rayden's future before making a final decision. They agreed to let Dr. Phillips use the appendix and Dr. Ross could use the belly button down the road (if needed). 

He decided to do an Appendicostomy, better known as the Malone Procedure (MACE). 

Laparoscopic Appendicostomy-Dr. Phillips made two small incisions for the instruments on the left side, one incision for the camera below the belly button, and another small opening on the right for the tube. Then he cut off the end of the appendix and bent it upward covering with the cecum (beginning of intestines). He stitched it in place like a hot dog inside a bun. Next, he attached the cut end of the appendix to the opening on the right side of his belly. Finally, he placed a catheter in the opening, going through the appendix and into the intestines. This catheter will stay in place for 6 weeks to prevent the opening from closing up while the rest of his body heals. Then we will be able to replace the catheter with a miniACE button. 

Dr. Phillips came out about 9:30 to tell us the surgery went well, although Rayden did throw up on his shoes before going under. (They gave him too much medicine on an empty stomach.) We didn't get to see him in recovery until 11:15 because he wouldn't wake up. The recovery nurse and the anesthesiologist said the Ketamine (anesthesia), and Gabapentin (pain) were overkill and he would just have to sleep it off. They would shake him, yell, even do a very hard sternum rub with absolutely NO response. I was kind of worried but they said his vitals and all were fine, and moved him to his room on 7th floor Children's. He continued to sleep the remainder of the day! His entire body was so asleep that his heart rate was very slow, and his bladder refused to wake. We ended having to catheterize him to remove the IV fluids. 

June 4-His bladder continued to sleep, so they ended up putting in a foley catheter around 6am.  We asked the doctors and nurses not to give him any more pain medicine because he won't wake up. When he finally woke up around 6 in the evening, he was super mean, moody, very argumentative, hitting, crying, and pinching. We tried to be understanding because he was coming off some strong drugs and in lots of pain. Even though Nanny, Papa, Granny, and Alex came to see him, he didn't remember it at all. We were surprised that he actually wanted something to eat though. He ate an entire cheeseburger, most of a ham and cheese sandwich and drank 1/2 a carton of milk. The nurse put 250mL of saline into the Mace for his very first flush. She said it may not do anything, but we will see. After seeing him drink an entire Gatorade, she even took out his IV. Later in the evening, he started crying really bad saying his chest hurt and he was full up to his throat. We ended up giving him some Oxycodone for the pain and he went off to sleep. 

June 5-I was awakened around 5am by Rayden saying "Mom, I heard something." The flush had finally worked. 💩 Rayden refused to eat anything today. I got him to drink a carton of milk and a Gatorade. We tried to get him ready to go down the hall but I noticed he had poo in the Mace tubing. The nurse decided to go ahead with the second flush around noon. This time she added glycerine to the mix. As soon as the liquid mixture was finished and she walked out the door, he had to go! 💩 Success! The only problem was, he got very dizzy, and was in a ton of pain walking to and from the bathroom. He continued to be very sleepy throughout the day and started complaining about his back hurting. We started to worry about a possible UTI when I noticed debris in the foley tubing. Noone really seemed concerned and said they would take it out tomorrow. The nurse challenged him to drink another Gatorade before she came back and he took the bait! He had it drunk before she even left the room! His face lit up when Gina, a nurse from our previous lengthy stay, came to see him. She sweet-talked him into getting up and riding in the wheelchair downstairs with her (no parents allowed). When they returned he was a different kid! He was more talkative, took several laps down the hall (in the wheelchair) while eating a bag of Doritos, and went to the playroom. He even ate a ham and cheese croissant from Starbucks. 

June 6- Rayden woke at 3am in excruciating pain in his back. I quickly noticed there had been no urine output since 4pm yesterday. The nurse brought him some Tylenol and asked if he wanted something stronger. She sent the resident a message about the foley cath. We waited and waited. Then she brought some Oxycodone. She ended up sending 3 more messages with no response. I got so angry. I went to the desk and demanded that the charge nurse call up the chain. In the meantime, the nurse brought some Morphin. We refused to give him more medication without fixing the actual problem. Soon the resident gave them orders to flush the cath. Three different nurses tried with 2 different sized flushes but it wasn't budging. The cath was definitely clogged. The resident came up here with a plan to just move the foley around inside the bladder. I got real angry and told them no! It needed to come out! He disagreed with me and suggested taking it out, but replacing it with another foley cath. Again, I stood my ground and demanded they remove it. He was mad, and sent the nurses back in the room to do what 'he' said, but they knew better. As soon as they took the cath out it gushed blood and urine. There was quite a bit of blood in his diaper that must have seeped around the cath. At this point I was angry enough to text Dr. Ross, his regular urologist, personally. She immediately called me back. She told her resident to look into his care and weigh in. He told the nurses to do a bladder scan. If the volume was more than 200, he wanted her to cath. It was actually 569! During the in and out cath there was tons of bloody urine and debris. I have never seen it like this before. Dr. Phillips recommended an IV to flush the kidneys but Rayden said he would drink instead. He was suppose to drink 2 1/2 Gatorades before 10:00. He tried, but by 11:45 he had only finished 2. The nurse did another bladder scan that revealed a volume of 257. We took a bath and a walk around the hall to see if he would void on his own, but nothing happened. We got him to drink the 3rd Gatorade and ate 2 chicken nuggets by 2pm but had to cath again because he started having the horrible pain again. This time they sent the bloody urine for testing. We ended up calling the PICU team to put in another IV to help flush his kidneys. We did his flush between 6-7pm. The fluid seemed to come out as quickly as it went in. He threw up everywhere after his 8pm meds. His urinalysis report came back abnormal in several areas! It has been a very long day and looks like it's gonna be a long night. Michael and I decided to take turns. He took the first shift allowing me to sleep a little. I took the second shift. 

June 7- Rayden refused to eat or drink all morning. When he sits up he starts burping and he says it gets hot down his esophagus. Sounds like reflux to me. The doctors decided to add sucralfate to coat his stomach and soothe everything. They also ordered labs, a urine culture and an x-ray of his abdomen to check for kinks in his intestines. We started walking a bit. This seemed to help his bladder wake up and void on its own again. No need for cathing or pain meds all day! WIN! Even though his labs came back fine, they decided to add ceftriaxone, an antibiotic, through his IV. His x-ray was normal as well. We got him to eat a little in the afternoon. We successfully administered the flush ourselves also. 

June 8- Rayden woke around 4am in pain again. After bladder scanning and cathing, he went back to
sleep. He finally decided to take his meds and get out of bed around 10am. He's been eating good and his pain has remained tolerable all day. He fights me tooth and nail when I MAKE him get up and walk, but once he's finally on the move he's good. Tough love!! We even went to the play room and the sun room today. He played pool, ping pong, and foosball. His urine culture came back normal this afternoon and we administered the flush successfully ourselves again. The bright spot of the past two days was he had Gina as his nurse. 

June 9- Day 7 Rayden was finally discharged around 1pm. We were so happy to get him home, showered, and sleeping in his own bed. 💙

Gina and Bonnie

May 7-22, 2025 "Special Olympics/Awards/Miracle League"

May 7-Special Olympics 

May 22-3rd Grade Awards

We are so proud of Rayden's hard work this year. 
He received Terrific Kid and Student of the Month. 

Miracle League

Rayden had some special buddies this year; Case Bass and Uncle G. 

April 15, 2025 "Seizure #21"

Rayden woke this morning around 2am screaming in pain from a severe headache. I ran to his room to find him holding his head rolling back and forth. He was aware enough to tell me his head hurt bad, then he started gagging on excessive saliva. I rolled him to his side while Michael retrieved the rescue medication from the bedside table. By the time he opened it, the attack was over. I'm afraid to think that this could have been 'after' the actual seizure and we slept through it. His watch didn't alarm us. I laid with him the remainder of the morning, of course.

We got up and went on to school. Rayden slept on the sofa in his classroom for 1.5 hours.

I sent his epileptologist a message and she suggested I contact his neurosurgeon because it sounded like a shunt malfunction. I quickly replied that he has gone through 6 shunt malfunctions in his life and they DO NOT present like this at all. Dr. Elton agreed with me.

She then changed her tune and replied that it could be a shorter or milder version of his previous seizures. She suggested continuing to monitor him for now. If it occurs again, we could up his medicaton lacosamide (Vimpat) from 12 to 15 mL.
 
She also suggested thinking about planning a stay in the UNC Children's hospital to record the seizures by decreasing medications slowly. This would be a 3 to 7 day hospital stay.

April 8, 2025 "Hubb's Corn Maze"

Hubb's Corn Maze Field Trip 

Rayden had a great time at Hubb's Farm with his classmates. He played lots of games, climbed a giant chair, slid down an enormous slide, took a train ride, played in bubbles, rode the covered wagon, saw lots of farm animals, and enjoyed lunch with Mom. His favorite thing was panning for gold. He found so many jewels and even got a rope necklace to display his treasures. This was the first time we have taken his track chair to a school event. It was accepted well by his classmates and gave him the freedom to enjoy the farm just like the others. 

April 5, 2025 "Second Turkey"

This was the first time I actually went turkey hunting with the boys. Watching the sun rise from inside the blind was a new experience for me. We used the TideWe blind that Jeff Jones gave Rayden for Christmas. It was amazing being able to see out of the blind all around but the wildlife couldn't see us. It was also very spacious. We had Rayden's track chair and four adults inside. I was able to see aa couple of hen turkeys but no Toms. After breaking for lunch, I went home and Alex joined the hunting in my place. Jeff called two Toms in for a perfect shot. In this video, you can see/hear the excitement. Rayden was thrilled to drive his harvest off into the sunset. 🦃

💥 13.9 lbs. 

💥 10" beard

💥 15" and 16" spurs 

March/April "Fun Times"

Fun Times at School

 

Favorite Team Day with Mrs. Bennett

Western Day

  

February 28-March 1, 2025 "Dixie Deer Classic 'bear presentation'"

Rayden had a blast at the Dixie Deer Classic in Raleigh. He enjoyed making a turkey call, collecting all kinds of free items, seeing new things, and riding his track chair in public. He even helped sell tickets for the NC Handicapped Sportsman. The best part of the weekend was being presented his finished bear. He had no idea it was ready, and Jake Rouse was donating it to him in a special presentation. It was super special because so many loved ones came to support him. 

 

February 15, 2025 "Rabbit Hunt"

Even though Rayden didn't harvest a rabbit, he sure had a great time. We all enjoyed hearing the beagles howl and jump up the rabbits. Rayden was especially excited to use his track chair for the first time. All the kids seemed to love shooting skeet and receiving some nice raffle prizes. 🐇

February 8, 2025 "Goose/Duck Hunt"

Rayden enjoys every minute he gets to spend with the Kitty Fork Outdoors crew. 🦆

February 4 & March 15, 2025 "UTI's"

 

Feb. 4-Rayden woke up at 2am screaming in severe pain. There was a terrible odor and he wet through everything. I stood him up to change him and he practically passed out. He had visible puss and debris in his urine. As soon as Dr. Chiodo's office opened we were there. His blood count was elevated. She gave him a shot of Rocefin and we went straight home. We went back the next day. His blood and urine looked better, but not completely clear, so she gave him another shot and an oral antibiotic. 

March 15-Rayden woke again screaming in pain. His bed was soaked and there was that horrible smell again. He had visible puss and debris in his urine. This time he also had a low grade fever. Dr. Chiodo did another culture and started antibiotics. She recommended I contact Dr. Ross, urologist. 

I spoke with Dr. Ross. We discussed the fact that we began catheterizing in December and he's had two terrible UTIs since. We decided to do another Urodynamics study to check on his kidney's and bladder. 

April 22-Rayden's Urodynaminc study was normal. We decided to stop intermittent cathing before it causing damage.