The Journey of James Weston

Wednesday, August 25, 2021 Early Morning:   After getting James settled for the night, Mom posted up on a mattress on the floor next to James’ crib in our living room and Dad slept upstairs.  They agreed that Mom will take the first few nights and Dad will take the first few mornings until things get routined.  James decided to continue his late night/early morning routine of fighting sleep, which means Mom didn’t get to sleep much at all. She gave him his Clonidine and other meds at 2am and unfortunately the home vent setup creates a ton of water in the circuit which flowed all the way up to James’ trach and nearly water-boarded him.  Mom was able to navigate through this and eventually get James to sleep around 4:30am.  Dad came downstairs to give James his meds at 5:45am to find Mom just getting to bed.  Since James was fighting sleep, Dad held James for a little while to begin the day.  With Mom’s coaching, we found a position that worked real...

Tuesday, August 24, 2021 Late Night/Early Morning:  The night nurse tried to convince Mom and Dad to go home for the final night and that’s she’s got James covered.  This is always tempting, and after way too many fails, Mom and Dad didn’t want to risk anything for the final night.  So, Dad stayed and thanked the nurse for owning everything so he can sleep due to not getting much the previous 4 nights.  She agreed and said that James is her only patient tonight. PERFECT!  From 11p-12:30a, the nurse was good and helpful. Then she disappeared.  Dad attempted to go to sleep, but James didn’t want that to happen. He was fighting sleep (I guess he was excited to get home too). The feed alarm was beeping for 15 minutes, which shouldn’t happen. A good nurse comes in after 1-2 minutes at most.  So, dad assumed she got another patient. Nope!  She was on lunch and didn’t have anyone cover her patient. She comes in and says “sorry about that, I’ll prep the ...

Monday, August 23, 2021 Emergency Scenario Situation - Mom and Dad completed and passed the final test. James was put into a stroller and we were told that we needed to do a trach change while we was in the car seat. It was super stressful but we got it done. Unfortunately James was already super upset before we even started because we had clamped.his G-tube while he was in the car seat to prevent the upside diaper from leaking. Moving forward while we are traveling James will be connected to a Farrell bag instead.  For those who read our blog we also wanted to share with you something personal that we are going through. Tomorrow Mom is 7 weeks pregnant, but she just found out today she is experiencing a miscarriage. We've been extremely excited for the past few weeks and even bought James this cute onesie to announce it to family. What gives us hope is that this was a natural pregnancy, and was not IVF. Mom is currently is a lot of pain and it's just a lot right now with gett...

Sunday, August 22nd, 2021 Early Morning :   Dad spent the night with James and they both slept until 2:30am and then … Baby Monster James was Inconsolable until 5:30am.   It seems like gas and secretions.   Dad suctioned a bunch and continued to pull stuff out. Dad held him. Dad rocked him. Dad patted him. Dad changed 2 diapers.   No sleep for Dad or James tonight … 😴   Dad finally began to dose off around 5:30am and the feed alarm began going off. After 5-10 minutes of continued beeping, Dad got up to find the Nurse and saw why she wasn’t responding … she fell asleep at the desk around other people. 😮 . Dad watched one of the nurses nudge her when he walked out. Unreal. Pretty rough night overall.   Morning :   G-tube bile weighed in with 158 mls output during the past 24 hours.   The Premie diaper was 58 mls for 8am output.   Dad clamped at 8:10a for his hour. No leak during the clamp, so that's good. James then had a big poop a...

Saturday, August 21st, 2021 Mom and Dad finished up their Room-In on Saturday. Everything went really well! The hardest part is going to be preparing his feeds and making sure that those are given on time along with the meds. As soon as you think you have a break from giving him a med you realize that you now need to prepare fortified breastmilk. Preparing fortified breast milk includes thawing out frozen breast milk moving it to the fridge then taking the thawed breast milk mixing it with measured out Similac Advance powder (180ml of breastmilk to a teaspoon of formula). He only needs 130ml though for 4 hours because the CDC regulation is that breast milk can only be out for 4 hours at a time. Currently his continuous feeding schedule is 32 ml an hour so that is 32 x 4 = 128ml (rounded to 130ml). But because we have to fortify 180 ML at a time there is roughly 50 ml left in a bottle we put back in the fridge until the next feeding. Mom and Dad gave James a bath and his teeny little tu...