The Journey of James Weston

Tuesday, October 4th, 2022 So last night was pretty bad! 😩 Three of us were in a king sized bed but we also needed to keep a pillow on the other side of James so he didn't roll off making it feel like four people in the bed. James' pulse ox alarmed all night. He wasn't even on oxygen all day but then as soon as he got into a deep sleep, and he wasn't even moving his O2 would drop. Mom and Dad were up all night trying everything... 🥱 suctioning, replacing the pulse ox, repositioning the trach, making sure there wasn't any water in the circuit, but nothing was working Mom turned on the oxygen tank . It just didn't make sense why all of a sudden he would need it but be fine during the day. James was sleeping soundly while our hotel neighbors were probably like 🤬 because of the peeping! For this very short hotel stay we only brought two oxygen tanks versus the huge oxygen concentrator. The first tank we started with was only about 80% full. Mom started on 1/16, i...

Monday, October 3rd, 2022 Woke up this morning and realized the air conditioning unit wasn't working. Obviously we turned the air up before we left town and when we came back last night we turned it back down. It normally takes a few hours for it to adjust. Even though the temperature in the kitchen was reading 78° the temperature near his crib it was reading 89° due to all of the equipment running. It was Dad's day off so Mom texted the landlord and shortly after he said the AC people were on their way. When the AC showed up he let us know that even though 2 weeks ago the issue was the capacitor; it's now the compressor again (that they already "fixed" this year). He was going to have to order a new part to actually replace it this time and come back tomorrow to repair it. Mom texted Dad letting him know we needed to do something (like get a hotel). So that's what we did! Mom had just finished unpacking supplies from the trip to Jax and now had to repack (qui...

Sunday, October 2nd, 2022 On our way back to Jacksonville today, but first we wanted to try take James upstairs to the game room 🎮 🎱 and also dip his feet in the pool 🏊🏻‍♂️ during his 30 minute trial off the vent. It was a race. Dad held James with the pulse ox draped over his neck while Mom carried the suction machine just in case. Upstairs Dad wanted to show James the Pac-Man game but James was not a fan. We think it was just too much change all at once for him. We managed to calm him down with some maracas and a few vintage toys. Next we were downstairs so that Dad could sit on the top step of the pool and have James put his feet in. He was also not feeling the pool. So while Mom did inventory of the Jacksonville supplies James helped by counting all of the trach ties. Juju played with James on the lanai. Traffic was pretty terrible on our way home for some reason it showed that there was a minor car accident causing a slowdown for over 4 hours. Then when we arrived in the area ...