Day 817 - Decannulation Rescheduled! 👏

Monday, March 27th, 2023

📆 Today after James' early intervention therapy, Mom called the ENT office and talked to someone in surgery scheduling about rescheduling James' airway evaluation in the OR. She asked if we were available on the 13th, but Mom felt like that was a little too soon since James was still recovering and he needed to handle getting capped all waking hours for weeks prior. We just started capping him again today. We scheduled for April 27th! Cross your fingers 🤞🏻 that James will be decannulated this time! Mom clarified with them that we would only be staying the one night. We would come in during the day for the airway evaluation in the OR with our ENT Doctor. They would do an in-depth bronchoscopy under anesthesia with the trach out looking to see if he has a good airway. This means no issues or concerns with tonsils, adenoids, or need for reconstructive surgery of his trachea. During our last ENT office visit the Doctor had done a short scope and said she thought everything looked fine.

🧫 In the afternoon, Mom followed up with the Complex Care Clinic to get the final results on the trach culture. Mom had already looked up on the Baycare Portal yesterday that the final culture results had come positive for Stenotrophomonas Maltophilia. James has had this bacteria twice before, it is very serious, and very antibiotic resistant. The only antibotic that really works is one that James is allergic too, Bactrim. After a lot of phone tag, they said that the results did show growth in his culture but not enough to warrant another antibiotic. They wanted us just to continue giving James the Cipro for his ear infection hoping that it would do something for the trach infection too. Poor baby is fighting a lot!

Book! 📚

P.S. You can email James your love and support as often as you’d like. Mom and Dad read these email to James as they come in. We all love them! JamesWestonAbramowitz@gmail.com