The Journey of James Weston

Saturday, July 3rd, 2021 First off, Happy Birthday Tommy! James' older brother turns 5 years old today! He is a rescue so this is the date we chose! Dad took charge today so mom can take a little break. Life in the PICU is slightly different. It’s smaller. The crib for James is MUCH bigger. The bed for Mom and Dad is MUCH smaller. We can eat in the room. We have movies access (mostly Disney, which is perfect). Several more nurses and doctors to help James.  It’s overall been very accommodating. Dad had a good time taking charge. He got invited to join rounds. We got approved for Q4 vs Q2, so they only need to mess with James every 4 hours instead of 2.  We had an early morning xray at 4:45am. Not the most fun way for James and Dad to wake up.  Dad did many diaper changes. Trach ties. Gave his Meds. Cloth wipe bath. Held the pacifier (and figured out a modified rig - only works temporarily). Held James. Even did his first Outfit change for James.  We attempted the tri...

Friday, July 2nd, 2021 James had a great night and slept really well! Woke up to a sweet love note left in James' crib for him by our favorite night shift RT! So sweet! 🤗 The morning started by finding out that our RN that would handle the transfer to the PICU today was a nurse that had James his very first week. (See photo below) She was perfect for our last day in the NICU! Lots of hugs with all of our favorite people and unfortunately missed a few who were not working today or yesterday. You know who you are! 😥 The transfer started around 11:00 a.m. and we finally got settled in around 4:00 p.m. in the PICU. Dad came with us this time and pushed our cart full of our belongings. James was able to sit in his open crib the whole way there! Previously he was put either in a transporter or in an isolette both with tops on them. We brought extra oxygen tanks with us, the ventilator, the pulse ox machine, his feeding pump, etc... It's a lot of stuff and it really gives you an ide...

Thursday, July 1st, 2021 Today we are celebrating James Weston's 6th month Birthday 🥳 and saying Goodbye to the NICU. 🎓 Tomorrow we will move to the PICU across the street where we will eventually get discharged. ✌️ We know that this is what is best for James but we'll be sad to leave our awesome Primary nurse, Rejine*, and a few others who have become family here. 😭 Posting a link to his Birthday Trivia if you want to take a shot at it! We'll announce the winner on the blog! 🥰 * Who has consented to be on the blog. Trivia: bit.ly/JamesWeston6months James didn't really take any naps today as he has severe FOMO (fear of missing out). He ended up getting a bath, then we did trach ties, followed by a graduation photo shoot. Mom and Dad brought in sugar cookies from Publix for the staff. Dad wanted to point out that they had "Jimmies" on them. We had several nurses and RTs stop by the room and try their luck at the James Weston trivia game. Some of the questio...

Wednesday, June 30th, 2021 Morning: James had lots of snuggles by RNs and Therapists in the morning.  Our Care Conference was at noon. To make a long story short we are going to the PICU on Friday and will be leaving the NICU for good. We will be very sad to leave our Primary Nurse and a few others. 😭 This is what's best for James and it will also get us closer to discharge. Even though they still have RSV they are saying it is not too bad in the PICU but still on the floor (🤷). So James is due for another synagis shot. Evening: Mom and Dad went out to dinner and when Mom got back she noticed that the Doctor was starring at her walking down the hall but didn't say anything and she thought that was odd. Well about an hour after being in the room the RN informed us that James had disconnected his oxygen, went down to 4 , and had to get bagged. This is the worst thing that has ever happened to him yet! This is why Mom normally does not leave the room. We understand that this is...