11/17 - PM Update

Emily had a good day today. After her Bronchoscopy she did well and was happy for the majority of the day. She also slept a lot, maybe from the sedation wearing off from the procedure, so when we left to go to the RMH she was still awake. We need sleep though, so we are trusting that the good Lord will keep her at peace and give her rest this night.

It can be tough seeing new nurses take care of Emily b/c we are always being re-introduced to another medical professional where, most of the time, we feel that we have to prove ourselves as medical caregivers. If we do not exude a certain level of competency with the medical world we tend to get what I call "parent answers." Those things that the staff says to us so we will stop bugging them, even if it is not really true (yes, that has happened before -- many times). Now, I am not saying that that is all we get, but it does happen. So far the majority of our nurses have been great and talk through things with us so they understand what we are trying to accomplish. This is good since we take care of Emily 24/7, with respiratory and other therapies, by ourselves, at home... with no medical specialists helping us day in and day out. How does one really get that across effectively?? Sometimes you just can't I guess -- but seriously, unfortunately we are no strangers to this care. -- this gets tiring.

Ok - that is enough semi-venting for now. I have to get to bed for goodness sake!!

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