The Journey of James Weston

Monday, August 8th, 2022 We were expecting to go into this pulmonology appointment with James getting trials off the vent. In our last appointment a month ago with the doctor he said that all of James' vent settings were low enough to start trials. However this appointment we didn't get to see our doctor, since he was scheduled for rounds at the hospital. We saw the nurse practitioner instead. She was under the impression that James still needed to lower his ventilator settings before having trials off the vent. We were crushed as we had been waiting for this for the last month. These are the things we discussed: Lowered Pressure Support from 18 to 15 and Respiratory Rate from 25 to 20. We asked for another prescription to an antibiotic because we believe his trach infection never cleared with the last round. We were prescribed Cipro this time. His secretions were still thick and yellow. We did an end tidal C02 test which looked great. We talked about starting his monthly synag...

Sunday, August 7th, 2022 Today was family day and we were headed off to the Florida Aquarium 🌊 again since it was a free Bank of America Day. We like to go for the last hour of the day. Dad dropped off Mom and James at the entrance and drove to the parking lot. That's when Mom noticed while hooking up his equipment that we forgot his feeding pump. 🤦🏻‍♀️ Since James has been losing weight we didn't want to mess with his schedule. When he load up the car we always disconnect his feeding pump at the extension tubing just to have less cords. Ideally we hook him right back up for the car ride. We also do this same thing with his pulse ox. James was on his 1½ hour break at the time we were getting into the car. We had his feeding bag filled with water ready to go for his 2½ hour water feeding that would be next, but without the feeding pump it doesn't work. So Dad turned around and picked us right back up. Kind of a big deal getting in and out of the car with everything, but w...

Saturday, August 6th, 2022 James spent the day with Dad playing with all of his toys and relaxing. Mom worked on the blog email subscription through MailChimp. This upcoming week will be busy with appointments! P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com

Friday, August 5th, 2022 Mom gave James a bucket full of toys so he could explore. He took each one out one by one and inspected them. Which toy was his favorite? A wooden spoon! 🥄 We have been having to vent James even more since the new button probably because air is not able to escape as easily, trapping it in the stomach. Instead of gastric contents only foam is coming out, which just means that excess gas is in the stomach. Mom vented almost 50 mLs. A couple of theories on why James has this excess air 1) ventilator pressures 2) being on continuous J feeds (essentially having a GJ). When the feeds are continuously fed to his small intestine it pushes the gastric contents that was coming through the pyloric valve back up to the stomach causing excess gastric juice and air. The goal is to get him back to a G-tube, which will take several months of slowly increasing G feeds and stretching his stomach. In the evening, Dad watched movies 🎥 with James while Dad sent Mom to a hotel to ...

Thursday, August 4th, 2022 This morning James went through three outfit changes before his appointment around noon. He'll typically make it through the whole night, but then once the morning comes James can go through three diapers in an hour. Little boys sometimes pee out their diapers and today included a lot of laundry. 🧺 In the afternoon we had our appointment with James' Endocrinologist. He measured his arm and leg length which he said was a 1.5. Now we couldn't really tell you exactly what this means because to be honest his explanation was confusing. In summary, he said that babies are normally born around 1.7 and the goal is to get to 1. Right now James should be a 1.3 but that is also comparing James as a full-term baby and not a micro preemie born 3½ months early so once you factor that in everything looks good. But here's a thing about preemies,once they turn 2 years old you're not allowed to say "adjusted age" anymore. Yes this means that they...