The Journey of James Weston

Tuesday, August 31st, 2021 James is 8 months old (4 ½ months adjusted)! He is super grabby now, loves people, and lots of attention. He's a people person (this will be great for his resume). When someone is using their stethoscope to listen to his lungs he always grabs their hand or finger. Once when he was getting an echo and he just put his hand on top of this guy's hand basically showing him how to do his job. 😆 He is fond of music and loves when people sing to him. He is trying to talk so bad around the trach. It will only be a matter of time!  During this journey James has stayed in three different rooms in the NICU and five different rooms in the PICU! He is always so curious every time we are transferring rooms looking around at things down the hall, in the elevator, and not to mention when he was at home for a short bit. He really did love his car ride.  Even though it will be nerve-wracking to make the journey home again, we are ready! Loading up the stroller, then l...

Monday, August 30th, 2021 Morning started off with a new floater nurse with  27 years of experience. Very nice but... She  asked Mom if we were clamping the G-tube. Mom explained that we aren't clamping that at all right now until we get off the Reglan, his GTube is venting 24/7 into a diaper. Mom stepped out to use the restroom while she gave the 9am meds. Mom came back to see the bed flooded and everything flowing out of his stoma with his G-tube clamped. The nurse took the preemie diaper off the G-tube, pushed all his meds including ibprofen via his GTube and then clamped it. 🤯🤦‍♀️ Bed is soaking. She literally just asked right before. And then instead of taking ownership, blames the night nurse for not informing her. So great start to the day. In the hospital, if meds are spilled or wasted they typically do not allow them to be readministered since they don't know for sure how much the patient absorbed. James received a new pillowcase made by a volunteer and his first ba...

Sunday, August 29th, 2021 Now that James is back on the Servo, he has some new ventilator settings: PEEP: 12 (increased from 10) FiO2: 35 (increased from 30) Tidal Volume: 65 (decreased from 70) Rate: 30 (increased from 25) James had a fairly consistent high respiratory rate and heart rate throughout the day. He continued to receive sedation meds around the clock between Morphine, Ativan, Motrin, and Tylenol. As morning rounds progressed the doctor was unsure of what was wrong. Thoughts on it being withdrawal, GI issues, BPD. Possible tracheitis due to the secretions. He requested an echo for today. The doctor also suggests that we give James newer fresh breast milk vs milk from March. The only part of this that really sucks is that March's milk will expire in September.  Dad was able to do trach ties with the RN while James was calm for a bit. The feeds were stopped from 11 a.m. to 1 p.m. to give him a break. Then the plan was to do only Pedialyte next 12 hours. After 12 hours we ...

Saturday, August 28th, 2021 Woke up to James kicking off his IV. He ripped it right off his foot. The nurse wanted to get the IV team but Mom reassured her he didn't actually need the line. Today was the worst day for James so far in 8 months. Completely inconsolable. Sedation meds either not helping at all or only for very short periods of time. We tried Tylenol x2 and Morphine.  We are thinking it is either GI related, withdrawal or teething... 🤷🏻‍♀️🤷🏻‍♂️🤷🏼🤷‍♂️ All guessing here. No one knows. The on-call Doctor was in the room with us watching him and was just as puzzled as us as to what was causing him so much pain. We are definitely not clamping his G-tube today. So we started trying everything all at once... Took him off the LTV and put him back on the Servo ventilator (we did see a response from this for a brief moment) Increased his PEEP to 12 Increased his clonidine dosage, instead of weaning Gave him an Albuterol treatment Stopped his feeds Honestly, he just kept s...

Friday, August 27th, 2021 We originally had our pediatrician appointment and GI appointment scheduled for this morning which we had to cancel since we were admitted into the PICU.  Dad started off the day at the hospital and had to deal with the worst nurse we have ever had in 8 months. She was an intern in training so it was mind blowing how combative she was. Everything out of her mouth was super confrontational and immature. After 8 months, Mom is on her last nerve and asked to make sure we never have her again. Just awful. There is no way she will last as a nurse anywhere. The hospital's reputation will suffer. James was doing okay today. Getting him back to a PEEP of 10 on the hospital Servo with FiO2 of 30. In the evening Mom brought the home heater and ventilator stand with oxygen tank to the hospital. We wanted to make sure that James was on our home equipment to see if he is tolerating. Around 9pm we transferred him back onto the LTV with a peep of 10 and 1 liter of oxygen...

Thursday, August 26, 2021 3:00am: James was making a new weird choking sound. After 30 minutes of Mom troubleshooting on her own she screamed for Dad to come downstairs. Thank goodness Aunt Robin is a light sleeper she was up immediately knocking on his bedroom door. As everyone came downstairs (except for the sleeping dogs), Mom let them know that James doesn't look good and the pulse ox isn't reading correctly. She already had increased the oxygen to 5 liters (40%) on the oxygen concentrator, which is our max allowance. He’s completely inconsolable, his heart rate and respiratory rate are extremely high. When the pulse ox does pickup it says his heart rate is 190 and the respiratory rate is 100. He is desating and then pulse ox would say everything is in the 40s, which we knew wasn't accurate so we couldn't rely on the machine. We just had to assess him by looking at him. Mom and Dad go through all of the care training that they were taught.  Several things we...

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...