The Journey of James Weston

Monday, September 26th, 2022 James was up close and personal with the dogs. They are getting more and more comfortable with each other. 🐕 Champ is now a really chill dog and James was so excited to see him. Tommy is still jealous and is a little resistant to petting. James isn't acting like your typical toddler though; he is very cautious and waits until they aren't looking to quickly pet if anything. 😂 When James took a nap Champ decided he would lay down next to him to guard him while Tommy just wanted to smell him and possibly take his pacifier which looked like a fun new toy. 👶🏻 James needs a haircut bad, so we intend to trim it up tomorrow. 💇🏻‍♂️ Juju taught James how to play games on the iPad and James showed her how to do updates in the App Store. 🤣 James is on the move and we just know later in life he is going to love the monkey bars. 🐒 He scooted and wiggled his way across the living room and pulled himself under a chair. James has also turned into a real ight...

Sunday, September 25th, 2022 Happy Birthday Juju! Not many photos because we were busy celebrating. Aunt Taylor and Uncle Mark came over for the festivities. James is doing 30 minute trials off the ventilator now that he started Cipro last night. Dad picked up the pulmicort prescription and we ordered more formula for James through Amazon. The storm is expected to be close on Tuesday evening. 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, September 24th, 2022 Today we finally got the Cipro approved with the help of our Medicaid Case Manager who fought for us all day yesterday. While Dad was out picking up the antibiotic he also purchased more Multivitamin that we would run out of soon. We typically get everything filled monthly through Amazon's Subscribe & Save but they have been out of stock on several things lately. We also tried to get his nebulizer treatment filled, called Pulmicort, but they didn't have that available today. We also got James crusin' around the house in his joovy walker with his ventilator bungee corded to board on wheels. We made sure that the walker would pull the board without pulling at James' trach. This involved lots of bungee cords and Velcro straps. Besides the ventilator we also connected his feeding pump and Farrell bag. Unfortunately James wasn't into actually taking any steps on his own so we pushed him around and ended up attaching a rope to drag him. ...

Friday, September 23rd, 2022 We made it into Jax pretty late last night. James' sleep schedule is always off at Juju's. 😴 Forgot to mention that yesterday our DME company dropped off our new oxygen tanks. We had seven to replace. He was also dropping off all of our monthly respiratory supplies. Our DME is located in Melbourne, FL which is a good 3 hours away so he made it just in time before we had to leave for our appointment in the afternoon. He gave Mom a paper to sign that asked us if we were going to be going to a shelter. Mom was pretty shocked because we had no idea that a hurricane was coming. We do not have cable or a television downstairs, and nobody was really talking about it on social media. It's a good thing that we had already planned to go to Jacksonville for the weekend. Living in Florida we've been through several hurricanes and was even caught in the eye of the storm during Irma when it hit Jacksonville in 2017. 🌀 Today mainly consisted of Mom fight...

Thursday, September 22nd, 2022 In the middle of the night James' required more oxygen. He has been okay at ⅛ (.125) for a while but now his saturation was dropping. Mom went through the checklist and tried all the things... Suctioning, sat him up while he was sleeping and did chest PT, checked the pulse oximeter, replaced the pulse ox probe, unplugging and replugging cords, turning equipment off and back on, ended up even getting the backup ventilator and switching ventilators to see if there was a difference. Nothing was helping. Mom ended up increasing his oxygen to ¼ (.75) and with that he was still only satting at 95%.  In the morning James needed a lot of suctioning and we were pretty positive that this trach infection was starting to show itself again. About 2 weeks ago James showed similar symptoms (increased respiratory rate, increased heart rate, need for more oxygen, lung retractions, and increased secretions). We could tell that James's body was trying to fight it bu...