Monday Night

We are being very lazy this morning.  Last night was not fun.  Her oxygen saturation levels were all over the place.  Within seconds they would drop from 83 to 73.  I checked the probe, because that just doesn't make any sense.  Even though she was asleep, she wasn't in a deep sleep because she wouldn't let me look at her toe (where the pulse ox probe is connected).  As soon as I would lift the cover off her foot (ever so gently) she would kick.  She is something.

For hours I laid in bed watching her pulse ox and listening to her breathe.  She is so dry!  My guess is that she's getting some mucous plugging in her lungs, which is negatively affecting her sats, since she relies on every little part of her lungs.  When one little alveoli isn't exchanging oxygen, it makes a difference.

Anyway, I gave her several breathing treatments and saline jet nebs.  But what she really needs is some major humidification.  At 1am I had to look online to see if one of the local drug stores was open so we could go buy one for the hotel room.  I think she needs something way stronger than that, but I was thinking it was worth a try.  Desperate times...

During all of this I was thinking about two things:

1.  I need to accept that she might not be able to have this surgery tomorrow.  That is so much easier said than done.  The bottom line is that I would never want to put her in harm's way, so it's simply not worth the risk.  But, we've done so much to prepare for this!  As much as I need to let things be the way they "are supposed to be" we would be very disappointed, to say the least.  I would hope that her surgeon would work her in her schedule later in the summer, and that it wouldn't put us back into NEXT summer.  Ugh.

2.  If she is really getting sick (which I really don't think is the case) we don't have what we need to support her medically, here in this hotel room.  ACK!  We don't have oxygen.  And since I am using WAY more saline bullets than I've ever used before - we are running out.  And I'm afraid I might not have packed enough suction catheters.  We never go through this many!  These are not things that your average drug store carries, either.  This is why it's so difficult to pack for her.  You have to prepare for the unexpected, and know you can't go buy what you forgot.  It's been very unsettling to think of supporting her intensely when we are not at home.  She's either been in the hospital, or home when sick.

She woke me up at 1am because her breathing was so loud and fast.  I have never heard her breathe like that before.  Which is another reason I don't think she's getting sick.  I really think she's got some plugging in her lungs and so she's having to breathe harder and faster to over compensate.  But, that is a real worry, because what happens when her body gets tired of working so hard?  And I don't want her body working this hard before this surgery (assuming she's not sick).  Which is why I would have turned on her humidification and oxygen (if we were at home) to support her.  Ugh.

Since we are running out of saline bullets, I thought we would try putting water in her nebulizer to see if it would create some humidification for her.  It definitely created a mist and she seemed to improve afterward.  So maybe that did the trick.  We are going to run this nebulizer into the ground this week.

She woke up early this morning (something she RARELY does and something she NEVER does when she's sick) and was all smiles.  She's acting completely FINE.  I am looking at everything so closely and even though I want this surgery to happen tomorrow, I really don't think I'm in denial.

I guess we will see how she does when we venture to the aquarium today.  We just have to get through one more night...

Then, I had another thought...

If she does have this surgery - I will NOT be comfortable bringing her back to this hotel room without adequate humidification and oxygen support.  And I don't know how that's going to happen.  In order to run the humidification, you need an air compressor.  It's heavy, and loud.  At home we put it down the hallway, away from our bedrooms.  And being in a hotel room, that can't happen.

So, if surgery goes as planned, we'll have to figure out something.

Never a dull moment.

Okay, must get moving.  Harlie is asking me to fix her hair, brush her teeth and get her dressed.  She doesn't exactly get that we are being lazy.

Thank you for all your thoughts and prayers!
Much love,
Christy xoxo