The Journey of James Weston

Saturday, January 8th, 2022 Today our M,W, F nurse wanted some extra hours. So she ended up working 5 days this week. Technically we still have Thursday, Saturday, and Sunday open and without a nurse but the agency hasn't sent anyone over in weeks. We'd rather have no nurse than a bad nurse.  Today Dad spent the day at the office for Day 2 of his office staffing meeting. This was right after he kicked off his non-profit, "PB&J for Tampa Bay". James learned to hit his balls together, spent time in his bouncer, and had a nap on Mom. James received some amazing birthday gifts from a fellow PB&J volunteer. So sweet! James unwrapped them himself and can't wait to play with it! P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...

Friday, January 7th, 2022 Today we have thestaffing agency's Clinical Nurse Supervisor stop by in the morning. Mom decided to cancel Physical Therapy for the day since James had a hard night. So no PT this week. What's exciting is that James has a tooth popping through! It's his bottom left tooth. Barely there but sharp! 🦷 P.S. Do you follow James' journey? James would love to read an email from you. His email is JamesWestonAbramowitz@gmail.com. How heartwarming for him to receive these and fun for you to get a response from him in like 10 years...

Thursday, January 6th, 2022 Today our M, W, F nurse wanted to get some extra morning hours today since she needed to leave early on Monday. Before we left for the appointment we noticed that James had a rash all over his body. We had been giving him Tylenol and Motrin around the clock since the evening prior because he had a very high respiratory rate and heart rate. No fever but we needed to watch for any more reactions to yesterday's vaccines. It was just too many all at once. We had our eye appointment in the early afternoon so Dad and Mom took James to Palm Harbor. James had eye patched 34 times since his last appointment and the doctor was very impressed. We provided her a printer spreadsheet showing which eye, what day, and for how long. She said that most parents just don't do it so we were doing a great job. 👍 After her examination, her recommendation moving forward is that James patch his left eye 5x a week and his right eye 2x a week. She felt that his right eye is w...

🤣🤣🤣 I honestly thought that once we hit our due date in April that everything would be fine. As a first time Mom and someone without a medical degree I had no idea what to expect. In the beginning, I just assumed we would be discharged once he reached 4 lbs, since that is the minimum weight requirement to be discharged. I figured that once he would be full term at 40 weeks gestation everything would be fine. Well the fact is he needed the safe harbor of being in utero for another 3½ more months. Doctors can only do so much and the incubator is just a clear plastic dome. Artificial wombs are the future. Another topic for later. The realization of everything not being fine did not occur to me until our nurse mentioned that James may need a trach. We were told it didn't look like he was getting off the ventilator any time soon. It was very hard to hear at first but thinking back...what a difficult thing for that nurse to have to bring up, knowing that I would be devastated but als...

Wednesday, January 5th, 2022 UPDATED NUMBERS!  Weight: 18lb 13oz Height: 63cm Dad will fly in around midnight tonight from NJ. Yay! James had his pediatrician appointment today in the morning. The first thing was his developmental assessment. She asked Mom a lot of questions regarding James' abilities and fine motor skills. Once finished she scored James at 6-9 month category. A few things we need to work on like using his fingers to pick things up, intentionally throwing toys, understanding the word No, recognizing strangers vs familiar faces 😂 (James is very social, so we don't see this happening). And now we have a list of things to work on along with a very large book of games and activities to practice. He also received 5 shots in his thighs between 2 nurses. These we're his 12 month vaccines, which also included an extra Hep B due to a nurse in the PICU giving him a shot 9 days too early and "not counting". 🙄 It was awful and he cried. 😭 Even Cocomelon di...

Tuesday, January 4th, 2022 James had his pulmonology appointment for his synagis shots in the afternoon. This was the first time going to an appointment with our Tuesday nurse and it went very smooth. She was very proactive and just knew what to do! There is a fine line of helping pack up the equipment yet also keeping an eye on James. Seems simple, but Mom has had her fair share of experiences with nurses, so she had pretty low expectations. Mom was very impressed with her though and will most likely try to schedule all appointments on Tuesdays!  At the pulmonology appointment James was weighed and measured. They also checked his End Tidal CO2 numbers and the Doctor listened to his lungs. Our pulmonologist mentioned that he could try lowering his PEEP to 8, but the concern is that James has been having a lot of air trapped in his belly. Mom said she thought this was because the trach was too small and the air was going around the trach. Because of this, the pulmonologist wanted Ja...