The Journey of James Weston

Saturday, April 29th, 2023 - Saturday, May 6th, 2023  😬 This is the first of the weekly updates... Warning, this past week has been a nightmare. 🌬️ Even though James did not need oxygen when leaving the hospital he required oxygen immediately at home. The first weekend after discharge James would drop down to 90 every time he slept or napped. Mom quickly bought nasal cannulas on Amazon since our rigged setup with the oxygen mask and neb kit wasn't staying on him. Of course James fought wearing both the mask and the nasal cannulas. We resorted to just laying the mask near his face and increasing the flow. ⚠️ On Tuesday during PT James' GJ came out around 12:45pm! We got in the car and we're headed to Jacksonville to go to Wolfson's. On the drive there they told us they couldn't get us in until tomorrow, so he would need to be admitted into the ER overnight with an IV. We figured since we couldn't get in until tomorrow anyways we might as well just go to our loc...

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...