The Journey of James Weston

Saturday, February 12th, 2022 Dad was able to handle morning duty while Mom ran some errands. He is always making sure James is getting his physical therapy in, 2 hours of eye patching, and a Disney movie. Tomorrow we are going to make another trip to the zoo! 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, February 11th, 2022 Last day of nursing for the week. We have a free weekend! Typical Friday of 8am physical therapy and then Mom on the phone waiting to talk to someone who can give her answers either with insurance, a doctor's office, medicaid managed care, children's medical services, or department of children and families. Hours upon hours of waiting to talk to someone only to reach someone who doesn't have a clue and was just recently hired. James is still in his oral phase where he puts everything in his mouth. He is learning to reach and point for things he wants. We are working with him on giving things back. Dad stepped out in the evening to meet up with his sales team. Mom held down the fort with cuddles and a Disney movie. Then we tackled a late night trach care routine and put James to bed. But not before Dad tickled James so much he be was cracking up! We can't wait to hear his belly xlaugh soon! P.S. Do you follow James' journey? James would lo...

Thursday, February 10th, 2022 We called our Opthalmologist to give her a monthly update. We've been doing 2 hours of eye patching a day. Mom told the office that he is following things back and forth will no wandering. The only new issue is that sometimes James closes his right eye when he doesn't want to use it. At first we thought something was in his eye but then we noticed if we put our hand on his left eye (good eye) he would open his right eye with no problem. 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...

Wednesday, February 9th, 2022 Today was a busy day. In the morning our Medicaid Case Manager stopped by. This is usually a monthly call with Mom, but this was the first time she could come in-person. We went over all of the upcoming appointments, changes to medications, and any issues with the home health staffing. Not really possible to do with the nurse in the room. James was charming as usual. Then we received a visit from Uncle Doctor David. He came bearing Christmas gifts, bringing us giant tubs of baby formula which we can always use! James lit up to see a new face. He is very social! Shortly after we had physical therapy appointment and James had a workout on the floor. Embarrassing enough the PT ended up just spending a lot of time helping James release gas. He was in a lot of pain.  In the evening Dad played guitar after trach care and then we enjoyed our new Disney+ subscription. Can you guess which movie we watched? Hint: "The ocean is calling". P.S. Do you follow ...

Update on James' progress! February has been great so far! The 1st week his Pulmonologist decreased his ventilator settings from a PEEP of 10 to 8! Normal PEEP is at a 5. The next wean would be to 6 and then 5. For perspective, James was at a 16 PEEP in the NICU so this is a great improvement! Since peep has a whole new meaning these days, this is what I'm talking about...PEEP is the pressure in the lungs at the end of each breath, holding your lungs open. PEEP prevents your lungs from completely emptying and collapsing. If your lungs collapsed there would be incomplete inflation on the next breath and reduced oxygenation. To learn more, feel free to use the search bar at the top of our blog. AND this past week James had a bronchoscopy done (a very small camera that looks down his trachea) and his tracheomalacia has healed. This means no more flappy airway. His trachea is stable! This means we can use standard trachs and don't have to worry about insurance not approving cus...