The Journey of James Weston

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...

Tuesday, April 25th, 2023 We ended up getting a call back from ENT and they gave us the good news that James did not need to come in tomorrow for a capped sleep study. So we would just be waiting for the hospital to call us tomorrow to confirm check-in time. James had PT in the morning and in the afternoon we worked on how to get down from standing. James was stuck and was scared to bend his leg. [Video below.] We napped upstairs and James' new thing is playing with the suction tubing while it's on. He put it against his leg and thought it was hilarious! During the nap of course the pulse ox machine would not work. We kept getting the alarm "Sensor Off Patient" and after trying all the things Mom decided it was the cord connected to the machine. This is our 3rd one that has broken. The Rad-G pulse ox wasn't designed well. We even heard this from another RT. Thank goodness we had a back-up from the pulse ox sales guy.  Mom received a call from her nurse saying that...