The Journey of James Weston

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

Friday, March 17th, 2023 Early in the morning Mom called and left a message for the PT at the hospital to let them know James still wasn't feeling well and we wouldn't be coming in today. He had a fever and enjoyed playing with the thermometers. Then Mom contacted the new GI office to see if they had received the transfer of our medical records from our current GI office. They said they were behind on getting them into the systems and we're currently 1½ weeks out, so they probably hadn't gotten to them yet. Maybe it's because they still use fax? 🤷🏻‍♀️ So we weren't positive they were even transferred over, we just had to wait until next week to follow up again. Yay! We had him on the HME for the majority of the day but put him back on the vent at night. Low fever, diarrhea, and lots of suctioning of his nose are the main symptoms. Ever since we were in the ER we went back to only feeding him water in his G-tube. So that extra 1½ hours that we were trying formu...

Thursday, March 16th, 2023 Today James wasn't feeling very good. Lots of suctioning of his nose. He is so full of mucus he is having a hard time breathing. We took James off the ventilator for PT but he ended up staying in the crib most of the time. He was very lethargic. Shortly afternoon we had him back on on the ventilator because he was just working too hard to breathe. Mom put the eye patch on him because we recently observed his eyes drifting. We were told by his pediatric ophthalmologist that we should eye patch him on his stronger eye when he is doing this. Mom noticed that James ended up turning his head causing his working eye to drift towards the front corner. This never happened before. Mom posted in 3 of the "eye" FB groups she is in, a group for Strabismus, a group for eye patching, and a group for vision therapy. Mom doesn't even remember joining all of these groups sometimes they are recommendations from others. It is super helpful to get advice right ...

Wednesday, March 15th, 2023 In the morning Mom worked on the farm puzzle with James. 🐄🦆🐖 He can put all of the pieces correctly into the puzzle! 🧩 James is rocking puzzles! Our RT came by to check on the ventilator. He was shocked to learn about the whole decannulation cancelling with RSV. We discussed a different setup with connecting James directly to the humidification chamber without using the ventilator. But it seems as though we don't have the correct pieces to do that and neither of us feel comfortable with just rigging something up. During the RT's visit, James received a surprise gift at the door from our new Minnesota friends. They let us know they were thinking of him while James was getting through RSV, and bought something off of our "extended" baby registry. 😂 It was the Melissa and Doug Tossed Salad Playset! 😍 James was able to cut the Velcro food with a safe play knife and mixed together some vegetables while picking things up with his velcro for...