The Journey of James Weston

Tuesday, November 16th, 2021 Dad left yesterday and would be out of the country for work this week. Mom has night shift while we have Day nursing. Today we had our Sunday nurse switch to Tuesdays. She has had James several times but is still learning how ventilators work, in-line suction systems, feeding pumps... basically needing to get up to speed on everything. So Mom spent the day training and handling all of his care. Around 5pm Mom was preparing James for his bath and Trach care when she noticed that his GJ was sticking way out. Essentially his GJ button was coming out and was very loose.  5:00pm Mom alerted the nurse while holding down his button that his GJ was out and that we needed to go to the ER. Her response was that she needed to eat her tuna sandwich 🥪 because she needs to eat every 3 hours or she doesn't feel well. 🤯 Mom asked her if she was a diabetic and she said "No".  Once she made her way over to the crib, Mom asked her to check the water in the ba...

Monday, November 15th, 2021 Our M,W,F nurse worked with Mom to James more active. We had him on his new activity play mat and in his bouncer. P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭

Sunday, November 14th, 2021 We took James for a little ride in his highchair outside on the deck. He also had an introduction to Dad's office. We were able to do this because Mom purchased extra long oxygen tubing (25 feet) from another Mom on Facebook. This will allow us to go upstairs someday and for James to see his nursery. He sat at the kitchen table with us in the morning. In the afternoon, James played on his new activity mat. He gets to kick the piano keys and play music.🎶🎹🎶 P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭

Saturday, November 13th, 2021 Too tired to remember what happened, if anything, on Saturday. Enjoy the photos 😆 P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️ P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭