The Journey of James Weston

Tuesday, January 11th, 2022 Today James had a very pointless ENT appointment. The whole reason we were being scheduled was because our Pulmonologist wanted James to get scoped to see if James' tracheomalacia had healed. They did not scope him. Instead they just looked at his stoma and said to keep doing what we're doing because his site looked great. His thought was that since James had a decrease in his PEEP that his tracheomalacia had healed. Mom tried to explain the mess with the trach and insurance. He didn't seem to care and just brushed it off saying that our trach was fine even for 31 trach changes. 😳 That the company that makes the trachs just puts a safety notice of only using a trach for 5 changes as a way to sell more trachs. 🙄 Yet no one we have talked to has ever heard of a patient never getting a new trach. James' cuff doesn't hold the water in the balloon properly after so many uses which is the reason for his leak. And if it were to rip we would ne...

Monday, January 10th, 2022 No appointment today. This week we have appointments on Tuesday for ENT and Wednesday for Orthopedics. And waiting to hear about scheduling an appointment with the helmet people. In the evening, Mom was contacted by James' primary NICU doctor to see if she would be open to talking to parent of a baby very similar to James. The baby is on the same path as James and she will need a tracheostomy soon. Mom of course knows this feeling of uncertainty and welcomed the call. They talked for a few hours and hopefully this brought comfort to the new mother. It is very overwhelming at about the 3 month mark. You need to accept the idea of a trach, you have no idea how things will work at home, the baby's limitations, and typically at this point the parents haven't been taught to use any equipment.  At some point Mom would love to create a local BPD Trach Mom's Support Group and work with the hospital on training. If we could have seen a trached baby in ...

Sunday, January 9th, 2022 It's been hard to write 2022 and also to write January!  Mom and Dad filled James' medical crib with the balls from Aunt Megan! James has been loving these, picking them up, banging them against each other, and throwing them everywhere! We are definitely going to lose some! Today we didn't have nursing. We just spent the day pretending to be at Chuck E Cheese. Mom took a nap with James on her bed. Something that seems like a pretty normal thing to do is a pretty big deal for us... To be able to lay next to your baby and cuddle. Of course James was the one who napped while Mom just stared at him.  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...

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...