The Journey of James Weston

Monday, August 9th, 2021 😫 James needed to be suctioned every hour last night from 12am to 8am. Mom also vented him and changed diapers as needed. He had a few spit ups throughout the night where his face and neck would be wet. 😥 8:00am 🤮 Projectile vomited even though Mom was venting his G-tube nonstop with a syringe. 🤷🏻‍♀️ 8:45am He was supposed to have labs done by the IV team but they needed to tend to an emergency. James was also supposed to be scheduled for an x-ray but supposedly GI never put the order in (?). We waited all day for those things to happen. It's pretty hard to schedule a trach care or feeds when we don't know when a procedure will happen. 9:30am 🏋️‍♂️ Physical Therapy worked with James and did a new position where they rolled up two chucks to make a really thick bolster and sat him on top as if he is riding a horse. This way James gets pressure to the bottom of his feet and strengthens his core. Our homework for this week is to make sure that James i...

Sunday, August 8th, 2021 James decided to give Dad a fairly easy start to Sunday. He woke up at 12:30a, not  agitated, just awake. After a small chit chat and a vent, he went back to bed. Only needed 2 vents during the night.  “Good morning Dad” with an eventful start to the morning.  Threw up around 6:30am. Then two more spit ups during the next 30 minutes.  Total of 4 spit ups and  3 outfits. 😞  And then … the poop 💩 began!   Three poops between bedtime and lunch time. One even went up his back causing another outfit change. 4th outfit of the day!  Doctor came by to discuss an explanation of G/J tube and believes that's a good direction for James. He drew how it works on the door window with a dry erase marker. It was very well explained to Dad.  Essentially, the J tube goes into the intestines and the G tube stays in the stomach. The G port will allow us to vent the gas and the J port allows us to feed James.  Even though James is h...

Saturday, August 7th, 2021 Mom got to sleep from 2:30am to 5am. James woke up right on schedule at 1am and 5am. Hopefully he doesn't do his thing where he only goes in 20 minutes spurts from 5am until 9am. Doctors switch on the weekend. To be honest, this doctor was pretty rude to Mom today. He told Mom that she needs to stop fighting him (which he means stop asking questions, there is a language barrier) and just agree to whatever he is saying. He said there is no reason she should be looking stuff up when she could just ask them to explain something (but yet, don't ask questions?!). Mom was literally like 🤯. Sorry, but we will always want to understand what medications and procedures our baby is going to get. We will ask questions and we will research on our own, always.  The LTV The doctor had him do 10 hours during the day and plans to do 10 hours at night. They also realized that he had the wrong settings the whole time! Which is actually a good thing. The sensitivity was...