The Journey of James Weston

Tuesday, July 6th, 2021 Updates/Changes: Today his 3 bolus feeds ran continuous. He did not spit up today.  After the Doctor did his rounds the Discharge Coordinator stopped by to go over nurse staffing for overall discharge information. But at the door was the next person waiting for us to finish talking. It was someone from OT to work with James. So because there was a lack of social acuity we needed to cut our very important conversation short to accommodate her looking at her watch. 🙄 James then had OT/PT. He slept through the whole thing. He really seemed like he had received strong sedation but he hadn't. He was lethargic. It was a little odd. Maybe James was just trying to get out of physical therapy. 😉 In the afternoon James was a kind of inconsolable still showing withdrawal symptoms so we gave him a dose of Tylenol. He then slept great from 4:30pm to 10:00pm.  Evening:   We gave James a "PICU bath". This is where we just wipe him down with basically baby wipes...

Monday, July 5th, 2021 At 5am smiling in his sleep. 3:30am: A random RN practiced doing a heel stick on James. Blood was everywhere. She tried three different sticks and then ended up going into the hall and asking an RT how to do it. And he let her know she needed to take the cap off the stick. 🤯 The whole time she's just telling James, "you're fine" as he is crying and screaming. 😢 She never apologized. Mom asked why an RT wasn't doing this and she said they were all busy.  It was awful to watch. 4:30am: X-ray is here! WTF 😒 James is supposed to be sleep at night. The RN sent them away to come back later during Day shift. Today was a slew of tests and people! X-ray of wrist to follow up on rickets Echo for the heart for pulmonary hypertension Bedside Report with Doctor and Team - discussed concerns with overmedicating, failed home vent trial, previous Doctors order from the NICU, and possible length of stay (which sounds like we could be here for another 6 mo...

Sunday, July 4th, 2021 Some things that are different in the PICU compared to the NICU: Constant code blue and code grey alarms going off over the loud speaker. In the NICU, we just had a fire drills. On James' ventilator the PEAK pressure alarm has a threshold set to max out at 60. Well in the NICU it was set to 85. So this is constantly going off. It is loud AF. They are saying that they can't increase this threshold because it would be dangerous for overexpansion of the lungs. Well for 3 months the NICU had it set to 85. Mylicon (gas drops) are PRN but have to be ordered from the pharmacy in individual doses. In the NICU, we just had a box so it was easy to administer. PICU suctions A LOT and never use saline bullets to flush.  In the PICU, Trach changes are mandatory on Tuesdays for everyone. Accommodation wise the NICU far surpasses the PICU in terms of sleeping arrangement and bathroom accessibility. However the PICU does give breastfeeding moms three meals a day. Mom wil...

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...