The Journey of James Weston

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...

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...