The Journey of James Weston

Tuesday, August 9th, 2022 We had an early morning ENT appointment. We hadn't seen them since January. The goal of this 6 month check-up appointment was to see where we are at in getting off the ventilator and plan for decannulation. Needless to say but she was also disappointed that we didn't start the trials off the vent yesterday. She explained that once James is off the vent completely it will be about 9 to 12 months after that until he gets his trach out. She did a bronchoscopy to check his airway and look at the granuloma in his stoma. She was able to cauterize that with silver nitrate. James was not a fan. (It stains your skin brown and takes forever to come off.) He tried sticking his fingers into his stoma blocking the doctor from applying the compound so Mom and Dad had to hold his hands down. The doctor let us know that the secretions she saw looked thin and white. However at home we typically see thick and yellow. She was concerned about James doing another round of ...

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 ...