Day 274 - Disconnect Alarm Continues 🚨

Thursday, September 30th, 2021

Finally hear back from RT at 3:00am, after calling a few doctor's offices to find no emergency on-call line. She directs Mom to change out the circuit even though we just put a brand new one on this evening. So Mom had to go wake up Dad upstairs for him to come down because this is definitely a two person if not a three person job. The reason being there are multiple things to hook up at the same time and we cannot have James off of the ventilator for that long. We end up switching out to the new circuit and the disconnect alarm stopped going off. Thank goodness! So now it's 3:30am in the morning, dad is going back to bed and mom needs to do the milk and James' meds. The nurse arrives at 7:00am so only a few hours of sleep until then for Mom.

So now we used our last circuit and we are supposed to change that weekly. Our insurance only gives us three a month. We have not received our second month order yet from our respiratory DME so we are still getting by with supplies from the first month. The DME respiratory therapist said she would come by today to bring us some more circuits and to look at the 2nd ventilator to see why that was not working last night. 

Overall a pretty non-eventful, exhausting day. James was definitely feeling better than he was yesterday. The nurse today stepped up and just started doing things. Yay! Mom still needs to write out directions for everything though in case we get new nurses or in case there is some misunderstanding.

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭