The Journey of James Weston

Thursday, November 18th, 2021 Mom started off the day with having James lay on her bed so she could change the sheets in his bed. Don't mind the mess! This is a fold away twin bed on wheels and works much better than an air mattress. In the afternoon, Juju, Aunt Robin, Aunt Taylor, Champ, and Tommy came for a short visit from Jacksonville. This is the first time Aunt Taylor met James! Juju assisted Mom with James' bath that he surely needed after the hospital fiasco! Mom did a solo trach tie change again with no issues. 

Wednesday, November 17th, 2021 1:00am James fell asleep for the short car ride home. When we got home Mom carried James in his car seat with the ventilator over her shoulder. This was the first time she tried this, to avoid getting out the stroller. She walked quickly into the house so that she could reconnect him to the oxygen concentrator. Jess looked up an Uber back to the hospital to get her car. With James sitting in the car seat on the floor Mom switched James back to the home ventilator which involves some fast thinking and very loud alarms. Then she picked him up from the car seat to put him in his bed and noticed that the floor was all wet. His entire GJ button was completely out! Mom was staring at James' empty stoma. His stomach contents had poured out like a waterfall all over the car seat and floor. The balloon was popped and deflated. Mom grabbed the rubber catheter taped to the the side of the bed and stuck it in his stoma to prevent it from closing. It was hard to k...

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! 😭