The Journey of James Weston

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...

Tuesday, February 8th, 2022 We had a very early morning appointment to get into ENT. Mom, Dad, and our nurse went along. We were able to meet with our favorite ENT Doctor who was a ray of sunshine compared to the Doctor we saw for his last visit.  The ENT Doc immediately asked everything to be set up for the trach change. She then asked, "Okay, who is doing this with me?". Mom jumped right in. The Doctor and Mom did the trach change on this tiny fold out chair that we laid James down on. It was quick but Mom and Dad has their routine trach changes down pat, so it's always awkward doing it with someone new. Mom held the trach and the Doctor took off the ties. She doesn't do trach changes that frequently so removing the trach ties with gloves was kinda difficult. We counted to 3 and then Mom removed the trach. The Doctor put in the new trach with no issue. Mom reconnected the oxygen.  We then moved James to prep for the scope; Mom was holding him sitting up. Once we dis...

Monday, February 7th, 2022 Today, one of James' maternal great grandpas would have been 114! 🎉🥳 In the afternoon we got labs done at the hospital. This was to check on James' Sodium Chloride levels since we decreased the dose in half. It was a one stick blood draw because we had excellent IV team members available!  He did his 2 hour daily eye patching, spent time in his bouncer, and worked hard on his turnout. 😂 James has been putting more weight on his feet! Video below shows how aggressive James can get about trying to eat everything!  Mom received the new trach that she had to buy from eBay and immediately called ENT to schedule for appointment for the trach change and scope. They were able to get us in tomorrow morning! After seeing the return address label, Mom figured out this trach was being sold from a Trach Mom in the FB group. It's actually illegal to sell medical supplies that were covered by insurance, and pretty crappy to charge another Medical Mom. Everyth...