Day 479 - GJ Replacement Procedure & Family from NJ Visits

Saturday, April 23rd, 2022

We got to call in the morning to come in for a procedure at noon. Over the phone Mom asked the Radiologist about the sedation and let him know her concerns. He stated that they would not sedate and then proceeded to list all of the "prestigious" hospitals where he had worked. Just some advice but anytime someone needs to name drop their previous employer, education, or job title, it's really off-putting...

When James woke up 7am you could tell he was still very sleepy. We were in the ER pretty late and James' sleep schedule was off. So Mom ended up holding him in a chair and he slept in her arms for an additional 2 hours! 🥰 At this point, James is only wearing the helmet at night and we are taking it off during the day.

Aunt Robin drove James and Mom to the hospital. It's very large and we definitely got lost. Robin stayed in the waiting room while Mom was able to gown up and go back for the procedure. Not only did they not sedate but they didn't even have the same button. He's been wearing an AMT 14FR, 1.2cm, 22cm. They only had two options for buttons: AMT 14FR, 1.5cm, 22cm OR MIC-KEY 14FR, 1.2cm, 22cm. The first number is the diameter of the stoma, the second number is the tract length (thickness of the abdominal wall), the last number is the length of the j-tube that goes to the small intestine. The radiologist was not a fan of the MIC-KEY. Mom asked him if he could measure his tract length. They laughed because they were not expecting Mom to know that was an option. Mom was trying to talk to the doctor while keeping James calm since he was hysterically crying. The radiologist just said, "Yeah, I think he could do a 1.5cm". After they measure they stuck a long metal wire into his J port and on the florescopy you could see this go all the way down into a small intestine. Then the entire GJ button which includes a 22 cm tubing was pulled out of him. This long metal wire enabled the radiologist to guide the new GJ back into his intestine. Very interesting to see under fluoroscopy. The good news is that once the procedure was over the staff let us know that there was a direct phone number in case this ever happened again we would not need to go to the ER we could just call the IR directly.

Unfortunately once we got home his stoma leaked so bad we've had to use two 4x4s and change his clothes constantly. He is pulling and trying to rip it out so Mom also put the ace bandage around him. There has also been a lot of old blood. Concerned about this button being not the right size and sticking out too far Mom reached out to the G-tube Facebook group for answers. There are mixed reviews on whether or not the button is the right size. Overall the consensus is that the balloon should be increased to 6ml versus 4ml that was put in during the procedure, and a ton of gauze should be used.

We arrived home at the exact same time as our family members from New Jersey were visiting. James' Great Uncle Mark and "First Cousin Once Removed" Kevin (yes Mom's family tree gets complicated). They were in Florida visiting other family and since we had not seen them in quite some time they stopped by for a quick lunch. It was great catching up!

On our way home...

Sitting at the bar!

Sticks out way too far!

P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...