The Journey of James Weston

Sunday, January 22nd 2023 Laundry day. 🧺 Dad watched James while Mom ran some errands. No photos were taken. Oops! 😕

Saturday, January 21st, 2023 Our goal was to get discharged today! Overnight James got back up to 45ml/hr feeds in his jejunostomy tube (J-tube).  Mom was able to talk to the doctors in rounds this morning! There were probably 10 people there. She let them know that we could do "this" at home. Literally nothing was happening, James didn't have an IV, wasn't on an antibiotic, not even on the ventilator during the day. They understood we were ready to be discharged. It always takes a while though. In the afternoon, the doctor that spoke to Mom yesterday came back in to let her know that James actually did NOT get a dose of Tobramycin yesterday. She was mistaken. Then shortly after another doctor came in to let Mom know that they wanted the pulmonologist's phone number. This was the third time someone had asked for it. Originally they wanted it to ask them about James getting cough assist therapy. Mom reiterated a few times that James did not use a cough assist or a ...

Friday, January 20th, 2023 🌅 At some point, probably around 6am this morning once we were settled in the PICU James' IV came out. He was sweating pretty bad the tape didn't stick, so it got pulled out. Since he wasn't getting fed, he needed the IV fluids. They asked someone from the IV team who used the ultrasound machine to give him another IV. At this point, we've seen enough people try to do IVs and if they need to use the ultrasound machine it's usually not a good sign. This one was pretty difficult to watch because she put it in his right forearm (after it being on his right hand) and she was threading it into his arm which what felt like forever! Dad had to turn away. James was crying, understandably. Hopefully this one will stay in! 😴 Today we slept because we didn't at all last night. Barely anyone came in the room. Overall the room was nice, much nicer than St. Joe's in Tampa but not as nice as Wolfson's in Jacksonville (close though). Dad spe...

Thursday, January 19th, 2023 The DAY was great just visiting with Mom's Godmother while Dad took work calls upstairs. Most of the fam went to a park. When they got back Dad had started on James' nightly care around 8pm.  Now the NIGHT...At 8:15pm Dad got Mom and let her know that James threw up and felt really warm. It was just clear, probably a lot of mucus and gastric juices, but not food from his intestine. Mom took his temp and it was 105.3. James was very lethargic, not able to stay sitting up and his eyes were rolling into the back of his head. Mom made the call to go to the hospital. We packed up all of our equipment as fast as possible with the help of some cousins we were out the door in a few minutes. We skipped his trach care because this was urgent. Looking on Google Maps we were 30 minutes from Nemours in Orlando and 1 hour from St. Joe's in Tampa which is where we lived for 8½ months. We decided to drive to Nemours. It would be an additional 30 minutes east bu...

Wednesday, January 18th, 2023 We arrived in Orlando around 2pm. We got a late start because James needed an extra treatment this morning and spent some extra time on the ventilator. Dad also had some additional work calls. James got to meet his cousins from Levittown, PA who were in town celebrating cousin Levey's 3rd birthday at Disney World! 🎈 They rented an amazing AirBNB with 7 bedrooms! These were a lot of Mom's first cousins and 1st cousins once removed. James met cousins; Alec, Levey, Kali, Cailyn, Anna, Henry, and his Grand Godmother Aunt Lori. 😂 There was also another family with two little ones that James played with as well. Everyone stayed at the AirBNB for the day and took a break from the parks. 🎢  For clarification... When the cousins are not in the same generation then they are "removed." First cousins once removed" declares that either one of you is one generation away from being first cousins. For example, if your first cousin has children, t...