Tuesday

We had an appointment this morning so I got Cicily her sponge bath, dressed and in her chair ready to go.  She cried the whole time.  I felt awful.  It reinforced why hospice is so amazing in not making people go anywhere, they deliver meds, make house calls, etc.  I can't say enough good things about hospice so far.  Cicily was good once we got out in the car (though that may be due to me giving her morphine and lorazepam) and the appointment was quick.  When we got home she just wanted to lay in bed (and have her clothes off which she laughed about - hey whatever makes a dying girl comfortable I say).  We listened to music, and played swipe the ipod games.  She took a tiny nap.  She was legit happy laying in bed all day.  As we were playing and laughing, I said Cis what am I going to do without you.  She looked a bit concerned.  I just couldn't think of any positive follow up. I'm just going to miss her.  Like every single day for the rest of my life.   

In the afternoon Grandma came and brought a silly clown nose.  Cicily and Sophie enjoyed antics with that of course!  And there was nail painting.  It's Minnie Mouse nails today.

That's Sophie's cot in the background.  She and Cis share a bedroom.  Since Cicily's scary breathing night a few weeks ago, Cicily has been sleeping in Mom and Dad's bed and Soph sleeps at the foot of our bed in that cot.

Cicily continues to have fluid in her stomach.  Drained 2.5 ounces at lunch and another 6 at bedtime.  We're suctioning clear secretions all the time from her trach, which leads us to believe she also has the fluid in her lungs.  She's losing a bit of weight.  This all adds up to what the hospice nurse mentioned to us about bodies not being able to use TPN at a certain point so it gets stored elsewhere. The only question is, is this another few days of bad and then her body will work for a while or is this a new normal.