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Some things...

November 25, 2012
I felt more rested this morning than I have in days, which is odd since I never sleep well when we are here.  Knowing that I am not the only one in charge of Lucy's care has helped to lower my stress level a bit.  I wake every few hours throughout the night and then force myself to go back to sleep for a few more,  keenly aware that I need to wake up early.  I startle easily, because of this I like to wake before all of the hustle and bustle of the hospital begins, you know before the resident is in your face asking you before you can even see straight how the night went.  FYI I am not a morning person, I require twenty minutes, twenty full minutes, to gather my whereabouts and focus my eyes before I am fully functional in the morning.  That is unless there is an urgent situation, then adrenaline kicks me in the a** and I fly out of bed faster than I ever thought possible.

The night before last I was awaken in the middle of the night by the resident, for a split second I had no idea where I was or who she was.   Lucy's oxygen saturations were falling into the 80's and they were asking me if this was normal for her.  Normal for Lucy, there is no such thing.  Luc was in need of a little more support so we cranked up her O2 and watched as the monitor brought her numbers back up to 100 percent, but not before first repositioning her nasal cannula. It's always good to check to make sure that it is on.  It would have saved the mama, the nurse, and the resident from having a mini heart attract as we continued to crank her up O2 up to five liters with no rebound in her numbers.  Once her cannula was positioned correctly we set her O2 at 2.5 liters, watched her numbers climb back up into the nineties, and all took a deep breath ourselves.  Her breathing is more shallow than usual, increasing the O2 has helped to increase her respirations as well.

Our palliative care team stopped by to see us yesterday.  We are taking things one day at a time, but we talked about switching Lucy over to a fentanyl patch sometime in the very near future .  There is a very real concern that Lucy could develop hyperalgesia, a condition in which her body would respond with increased pain as a result of a paradoxical reaction to opiate pain meds.  Apparently this is what happen to Lucy when we tried to sedate her with Ketamine in the spring of 2011, as we increased the dose of ketamine her pain continued to worsen.  In Dr. R's words, "this is a very real reality and would be horrific if it happened".  I am processing all of this, it is not easy, but comfort is our ultimate goal for our girl and we will do what we need to do to keep her comfortable.  I was told that hyperalgesia is not a concern with fentanyl.

The plan for the weekend is to keep her stable until Monday when our main doc is back, I can't wait to pick his brain about a few things.  Cultures are still negative, and her labs are not very telling.  Clinically she looks awful, but if you asked Lucy she would say she is good, she is always good and never tired for those who ever ask her :).

 Our little fighter, she tried to smile, and then immediately feel back asleep.
Thank you for your continued thoughts and prayers, love and support.
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