Dryness and machines

Tonight, we have Hannah hooked up to both her humidified trach collar and her oxygen.   This is a first.

We actually haven’t needed to use the humidified trach collar (keeps her trach moist while she sleeps) in months in the old house.   I don’t know whether it is much dryer in this house or the fact that the air filter was incredibly nasty (which we just changed out this afternoon), but she has woken up horribly dry to the point she has a bit of difficulty getting a good breath.   This has happened all three nights here, even with me giving her saline bullets many times during the night.

Even after a nebulizer treatment in the morning, it takes a while with a lot of saline bullet drops to get her back to normal.  But the good thing is that she does get back to her normal clear trach secretions.   Ironically, after this past bout of trachiitis, she has been more gooky than usual which is common for her, so it was surprising how dry she became overnight these past few nights.

Also, she is still desatting into the upper 80s/low 90s while she is sleeping.   With the added oxygen, she goes back up to the upper 90s where she should be.

Even though the two aren’t meant to work together (at least I don’t have the proper equipment to do so), I have it gerry-rigged to make it work.  I know the oxygen is helping, and I am keeping my fingers crossed she wakes up more comfortable and moist.

We meet with her pulmonologist on June 1st to work on a game plan as to what changes we need to make.  I’m worried about her oxygen levels dropping while she sleeps, but I also am realistic that this very well may be part of her disease process as it has been this way with many Gaucher babies.

It is incredibly loud in our room right now.  I wonder if they have a quieter humidifier compressor because I can’t hear anything, not even the TV which is just about 10 feet or so away let alone if Abby or Ethan wake up and need me.

New reality?  Temporary setback?  Well, either way, hopefully she will wake up more comfortable and not so dry tomorrow morning.