The Journey of James Weston

Only posting this 2½ months after we received them 😂...but better late than never!  This year has been crazy busy with all of the hospital stays 🏥, the Disney cruise 🛳️ and then the corona virus 🤧, the emergency GJ replacements and last minute drives across the state 🛣️, the cancelled decannulation and RSV 🤒.  In February, Champ crossed the rainbow bridge 😥 and just last week Taylor and Mark tied the knot. 🍾 We think it's important to capture memories 📸, so for James' 2nd birthday 🎈 this past New Year's Eve we had a photographer come to Juju's house. We were so glad that the family could be involved. Emily did an excellent job and was very sweet and flexible with us! 😊 If you're looking for a photographer in the Jacksonville area definitely reach out to her! Some favorites below. Click the link to see the rest! Photoshoot 12/31/2022 📷  Emily Morris

Thursday, March 23rd, 2023 Today James started the morning at 6am with a wet cough and lots of suctioning of his nose. James has never really coughed before, even though this is the main symptom of RSV. Sometimes with trach kiddos it hits them differently. So today we had a pulmonology appointment scheduled. This appointment had been scheduled since the 1st of the year as just a follow up. Of course we thought this would have been an appointment to follow up post decannulation but alas it would not. Due to James' symptoms this morning Mom called them to cancel. They don't want sick kids there either.  Mom couldn't believe that James was feeling worse at Day 19 of RSV. This wet cough wasn't from the ear infection and he had never had a cough before with any of his previous trach infections, so it had to be lingering RSV. They said RSV would only last 2 weeks and here we are on week 3. Mom reached out to the Trach Mom's FB group to see if RSV had lasted longer for any...

Wednesday, March 22nd, 2023 James woke up with thick green secretions. This was change to what had been coming up. 🤳🏻 Mom called the pediatrician to try and reschedule our "post RSV" follow up letting them know that James seems to now have a trach infection. As soon as we felt like he was getting better he has new symptoms including a fever. They actually asked us to come in today instead because they had an opening in the afternoon when no one would be in the office.  🛗 As soon as we got in the elevator James cried. He knew we were either going to therapy or getting a shot because that is what he is used to. They did a new weight on him which was 10.2kg or 22lbs and height 76cm which is 29.9 inches. They even got a blood pressure on him of 88/55. The only thing that was claiming him down was holding the car keys and listening to the Bluey theme song. 🎵  They did a sputum culture, well at least tried to but there wasn't much to suction. 🧫 We tried twice and then gave...

Tuesday, March 21st, 2023 James had physical therapy at the house in the morning and we took him off the vent for it. We tried to get him to practice standing but he wasn't very interested.  Mom has been trying really hard to remove stress. 🧘🏻‍♀️ But nothing can get a medical mom more riled up than getting a denial from insurance. 😡 Today we received a notice of adverse benefit determination saying that they are not covering James' hospital stay for RSV. The paragraph that this Medicaid doctor typed out explaining the "rationale" behind the denial is ridiculous. "There is no documentation of continued breathing problems after your child arrived at the hospital. Your child got better quickly and went home". Not only did the ER doctor highly suggest getting admitted for overnight observation but James left the hospital on oxygen and has been back on the ventilator since discharge. The amount of text messages, phone calls, emails, faxes involved to submit an...