Day 271 - Case of the Mondays

Monday, September 27th, 2021

Our M, TH, FRI nurse came back for her 2nd day. We will see, but the morning didn't start off so great. Mom & Dad (mainly) needed to tell her what to do because what is the point of having a nurse if we are doing everything... 🤷🏻‍♀️🤷🏻‍♂️

The issue is that she does not agree with the way we care for James. We are a few simple rules.
  1. Do NOT disconnect his circuit unless it's absolutely necessary.
  2. Do NOT check the water in his GJ. There is no need to "change out" the water.
  3. We also have a routine with doing trach care in the evening. She disagrees with this. (There is also a language barrier).
If a nurse cannot agree with these then it's simply not going to work. Right now, we still don't have anyone on Nights or weekends. Not sure if we will actually want someone here all the time. There is no privacy at all.


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! 😭



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