The Journey of James Weston

Monday, April 4th, 2022 Megan ended up getting another flight back to Dallas in the morning. In the afternoon Uncle Doug stopped by while he was in town. James' battle wound for Friday Night in the PICU. 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

Sunday, April 3rd, 2022 Today Dad watched James while Mom and Megan went out for Brunch! In the afternoon, Megan got to meet James and see our nightly trach care routine. She was supposed to fly out in the early morning tomorrow but in the evening the airline just cancelled her flight. Did you know this was a common thing now? You're just out of luck. ✈️ Crazy. After dinner, Uncle Doc brought over a flame safe birthday cake to celebrate while James slept! 🎂 Dad is an expert eye patcher! 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

Saturday, April 2nd, 2022 Since Mom slept at home, Dad had the shift at the hospital. This was the best sleep Mom has had in a long time. Texts from Dad to Mom (our charting 😂): 9:00am  "Overall a good night.  We both slept from 9:30p-1a. Then the LOW PEEP alarm was nonstop. I redid the circuit setup - put him through the railing, lowered that hanging water bottle, lowered the table, and got a massive amount of water out the line. (I had RT in here with me while I did it).  Then vented him for a bit from 7:45a-8:45a and diaper change since he wasn’t settling. Lowered the Farrell bag. Got done around 3am and just woke up now.  He’s still in and out of sleep.   Around 8:20a, the nurse, gave him the 7mL of Bactrin way too fast and he spit up more then I’ve seen.  They’re doing rounds now." Mom found out the day nurse is someone we had in the NICU. Nice but very incompetent. Definitely not our pick. We had several incidences in the past where she blew Mom's m...

Friday, April 1st, 2022 April Fool's! I wish! No Mom and James are still in the Hospital!  It was a very long day for Mom on 1 hour of sleep (6am-7am) in the good ol PICU chair. Our Day nurse was super nice and remembered James from the NICU even though we never had her before (everybody knows James). Dad was able to drive by the hospital around 12pm to drop off Mom much needed Starbucks and food. Mom had to let the nurse know that she would be running downstairs real quick to meet Dad and that she did her to stay in the room for a second. Even though it's only for a few minutes it's still scary to leave James by himself. Now that he is bigger, he is also stronger and can pull on things and disconnect himself easily.  James was very vocal and let everyone know he could talk over his cuffed trach. This alarmed some of the Doctors and PAs who could not get used to hearing him and kept thinking something was wrong. Someone from Child Life stopped to bring James some developmen...

Thursday, March 31st, 2022 One year ago today James had his tracheostomy surgery. This year went by so fast! Mom noticed that James had been having retractions all day with a fast respiratory rate. After posting to the Trach Moms Facebook group asking for their advice it was a resounding Yes to take him to the ER. *For context the lung retraction video below was taken at 7:45pm. It just so happen to be Trach change Thursday so we wiped him down and changed his trach before heading to the ER, since we didn't know how long we would be there. James then fell asleep because that's what he does after trach care. He is used to his nightly routine. We called the pediatrician to let them know we were heading to the ER. They said that was a good idea so that we could get a lung x-ray and sputum culture. We arrived around 10:30pm. Unfortunately only one parent could enter at a time, so Dad stayed in the parking lot while Mom registered and waited in the lobby. We were brought back to an ...