The Journey of James Weston

Friday, April 28th, 2023 Sorry for the late late post. After this post we will be doing weekly updates. James did great during the night and did not need any oxygen support while in the hospital!  He was discharged in the afternoon! No trach and no oxygen! We were given an inhaler for his FlowVent (pulmicort) treatments along with a device to administer it. The AeroChamber is a spacer used with the inhaler to help control delivery of medication. 🫁 We took James to his first Japanese Steakhouse and it was also the first time he saw fire. ⛩️🍚🔥 🎹 When we got home James played the piano and loved that we could add in a drum beat with the keyboard. We gave James his first bath without trach ties! 🛁 We used a waterproof Band-Aid to cover his stoma. 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

Thursday, April 27th, 2023 Take two! Second times a charm! Let's try this again! It's been 7 weeks since we were originally scheduled for decannulation. James survived RSV but it really took a toll on him for a whole month! Today James has his airway evaluation! If everything looks good and he doesn't need to have reconstructive surgery, or have his tonsils or adenoids removed then his trach will be taken out. He will then be monitored overnight in the hospital without a trach. If successful, he will come home with just a Band-Aid on his neck! James will have joined the naked neck club!  Yes and we are over 1 week behind in the blog. Don't know if we'll ever catch up. Getting just one post a day done is a lot right now. Thank you so much to those of you who have reached out! ❤️ Depending on how this week goes we will most likely be wrapping up the blog with his decannulation. 🏥🥼👩🏻‍⚕️🩺👩🏼‍⚕️💉👨🏾‍⚕️🩻👩‍⚕️ Success! After 848 days, James officially joined the n...

Wednesday, April 26th, 2023 *The blog is behind due to exhaustion . 😫 🤸🏻‍♂️ Today we had moved PT to today which would have normally been tomorrow. We didn't know what time we would supposed to arrive at the hospital yet for tomorrow. We finally received a call at 4pm telling us we needed to arrive at 7am tomorrow morning! She also said that James would need a bath in antibacterial soap, nothing to eat after midnight, and no water after 6am. So Mom planned his formula to stop at 12am and than just ran water through until 6am.  🎥 Instructional video below of solo trach change.  🤰🏻 Today Mom had her first ultrasound. It was done a week earlier than normal. Everything seemed fine but there wasn't much to see. They saw a gestational sac and the beginnings of a yolk sac. No fetal pole yet but that is understandable since it is so early. She just said that "we are seeing everything we are supposed to see at this point in time" and she was just being overly cautious be...