The Journey of James Weston

Saturday, August 14th, 2021 He has been doing this new thing where he is coughing, then starts choking, then turns purple quickly. He is coughing up his own secretions out of the trach, but it is scary to watch.  Pulmonologist stopped in and in summary said that he does not want to try to wean the PEEP while inpatient. He said that he believes we should get the GI situation under control before going home. Mom informed him that the doctor will be taking over this week is going to be pushing for our discharge. He said that it is good that someone on the team is pushing for it. And then the GI doctor stopped in and said he heard Mom spoke to the pulmonologist about concerns regarding the G-tube leaking into the diaper. Concerns about how long this is going to be. He said that it should only be a few days. Mom let him know about she reached out to the G-tube Facebook group of moms and a lot of them say that they've had to vent into the diaper for several months, sometimes permanently....

Friday, August 13th, 2021 💉 Mom requested that James get Versed for his blood labs. It takes 15 minutes to kick in. Unfortunately they didn't wait and immediately started with sticking him. Mom sounds like a broken record everytime they need to do labs, letting them know that James is a hard stick, his veins are branched out, he is strong, that they will get the catheter in and then he will pull and you'll lose it if there aren't enough people holding him down. Every single time they have to stick him multiple times and say, "Man he is strong". Yes, now can someone make a note in his chart after 8 months? He was stuck 3 times. The first tube clotted so they needed to draw again. Mom asked if they could check for Factor V Leiden which is a clotting disorder that she has; there is a 50% chance that it gets passed down to James.  😷 Covid is rampant here in the PICU. Our neighbors have it and the staff has to where isolation gowns when entering. 😬 💩 Gave James a g...

Thursday, August 12th, 2021 7:30am James was headed down to Radiology with Dad. For anesthesia he got gas through his trach and meds via IV.  8:00am Dad was not actually allowed in the room. James went in for the procedure. 9:30am Procedure was a success! James now has a GJ.  James woke up and we noticed that his G-tube was filled with gastric juices from his stomach. It was shooting all the way up into the farrell bag. Really seemed like too much. Feeds were restarted at 32ml/hour, continuous for 24 hours all fortified breastmilk. Gastric juices coming out of the G (stomach). Shooting up to the Farrell bag. At the site we noticed his GJ was leaking around the stoma. It was practically pouring out onto the bed. Mom changed about six split gauzes before the nurse could get the doctor. They contacted GI for suggestions on what to do. GI suggested that we vent the G into a preemie diaper.  Good thing we have preemie diapers at home. Mom ended up putting a 4x4 around the butt...