The Journey of James Weston

Thursday, January 13th, 2022 Today our M,W, F nurse worked the morning hours again to get some extra hours. James had some eye patching, playing in the bouncer, sitting up in the boppy, and some more floor tummy time time. Mom was finally able to take a nap while the nurse was watching James. You can only go so many days on less than 4 hours of sleep a night. We ended the evening with our regularly scheduled trach change. This time we switched up roles. Dad took the trach out disconnecting him, and Mom put the clean trach in. There is a lot of anxiety every single time! Don't think that will ever go away, and it shouldn't! It's better to be on your toes than comfortable, in the situation.  We were also going to do a circuit change but we are running low on circuits. Once we receive our next supply order from our DME we can do the change then. We have found that it is important not to do weekly or biweekly changes "just because". The things connecting him to the ve...

Wednesday, January 12th, 2022 We had a follow up appointment with an orthopedic surgeon who stopped by the NICU once to see James back in April. To be honest, this was another pointless appointment other than to get established in case we have concerns. Essentially he just looked at James said that it looks like he has shorter limbs. Nothing to actually do about it and it may even fix itself while James is growing, but we don't know. No actual measurements were taken. Just a quick eye ball look at James and scheduled a follow up for a year from now. Good news is that at Physical Therapy in the afternoon James was able to make strides with tummy time. We used a boppy with different levels and the medium height seemed to work. What's tricky is that something needs to support James between his trach and his G-tube. Too big and his trach is pushing into his stoma, too small and his G-tube isn't getting enough support off the ground. The other key is distraction. James needs to ...

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...