Day 731 - James' Turns 2 Today & the GJ Coming Out Again!
Saturday, December 31st, 2022
Today was James' Birthday and what a busy day it was. It started off with a professional photoshoot that came over to the house to take pictures of the entire family. 📸
We also celebrated James' New Year's Eve Birthday. 🥳🎂🎉 He opened presents and loved all of his new outfits and toys! James was not a fan of singing Happy Birthday and cried really tears! So Dad played the guitar and sang his lullaby instead. James got a Mickey Mouse birthday cake from Publix which looked pretty cool; however, it was filled with so many sprinkles inside that there was barely any cake. Also the red icing stained his hands really bad. We don't recommend it.
In the evening around on 10:15pm, Mom put James to sleep in the Pack N Play, way passed his bed time, when his G-tubes got caught on the edge and his entire GJet Button came out! As Mom placed him down she saw the open stoma in his stomach with nothing in it and screamed for Dad. They were all the way upstairs. After the second yell Aunt Robin responded with, "He's coming!". It didn't look like much was coming out of his stoma so Mom immediately grabbed the emergency bag to find the spare G-tube. This was purchased off of Facebook from another Mom. It's a much better option then just sticking in a red rubber catheter and taping it down. We could not put the GJ (technically AMT GJet) back in because it went down to his intestines, so putting in a regular G-tube was the best option. This way we could administer water, feeds, or meds if necessary.
Although everything is labeled in the emergency bag we have so much in there and on top of being stressed it was really hard to figure out which plastic baggie it was. Finally Mom found it, but now also needed to find the other bag with the prefilled 5ml syringe. Next time we are putting an extra one with the G-tube button! At this point, Dad was holding a towel over his stoma. Also the feeding pump was continuing to slowly run into his bed (but that wasn't a priority). Once Mom got the button in we needed to gather our thoughts to decide what to do. Mom strongly suggested to go to the ER whereas Dad wanted to just try feeding James into his G. We have only been giving him water so we would need to run the feed at a much slower rate causing him to not get enough calories. The other issue which is even more concerning is that James could silently aspirate if he didn't tolerate his G-tube feeds. This could cause a respiratory infection like pneumonia and cause him to postpone his decannulation. It wasn't going to be worth it.
We made a call to Wolfson's IR department because we had their direct number. The paper we had said that they were only open Mon-Fri during Day Hours. Mom spoke with the operator and she said a Doctor would call us back in 30 minutes. Well an hour passed and it was now 11:30pm. Mom called again and the operator this time said the Doctor said we should just go to the ER. With the Doctor's suggestion Dad agreed. We packed up his equipment into the car as the ball dropped for the New Year! 🎊 🕛
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