February 14-18, 2023 "Surgery #18, 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!!