The Journey of James Weston

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...

Monday, March 20th, 2023 Around 2:30am Mom was just getting to sleep as James had rough night with suctioning and needing oxygen on the vent. Mom figured She should call St Joe's PT to let them know that we wouldn't be coming in and James still wasn't doing well. James spent most of the day on the vent and did better most of the day. In the evening, Mom put him on the HME so we could go upstairs for a little bit before trach care. Monday is typically Mom's "On the Phone" day. We started off the morning with the Vision Therapy place following up to schedule James for an appointment! Yay! 👏 They wanted to get us in tomorrow but since he is still sick we scheduled for their next available which was late April. Mom also confirmed Early Steps for a revaluation appointment for Friday via Zoom and confirmed two appointments for this week for our pediatrician and pulmonology. And these were just the phone calls regarding James! We had early intervention therapy today...

Sunday, March 19th, 2023 Lazy Sunday as James is still recovering from RSV!  Scooting on the floor... Watching movies 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

Saturday, March 18th, 2023 Today was Mom's Day off. A lot of times that is her sleeping in to catch up on the lack of sleep from the week, running errands for a few hours, and then coming home to clean the house. While Mom is running errands a lot of times she takes some time to sit in a parking lot because that is the only place to get stuff done. Supposedly this is called the "parking lot trend" and it is all the rage with moms. 🤣 Whether it is trying to update this blog, researching answers to medical questions in Facebook groups, emailing our medical supplier, or just catching up with a friend the To Do list is neverending. Being at home there is constant mom guilt to just start taking care of your baby, even if he is just watching a movie with Dad. 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