A Hard Day's Night

My baby is suffering from hepatic encephalopathy. 

You can read more about it (if you dare) here http://en.m.wikipedia.org/wiki/Hepatic_encephalopathy

Basically the highlights are she sleeps all day and is up all night. 

And when I say up, I mean up screaming and irritable. And so itchy that she has scratches all over her nose and in her ears. And her clotting time is so bad that these tiny scratches take forever to stop bleeding. 

The worst of it is that she seems confused while all of this is happening. She will occasionally get this glazed look on her face and just stare off into space and acts like she doesn't recognize any of us. 

My heart breaks that I can't hold her and rock her to make her feel better. She won't let me. And she just tools back and forth in her crib if I lay her down. 

It's getting harder and harder for Bill and I to out a positive spin on things. 

Once in a while, I'll catch a glimpse of my girl. Her happy soul is fighting this disease with all she's got. 

And I have to say I am so grateful for the great man I'm married to, He could tell I was pushed to my breaking point the other morning--I was walking the hospital halls at 5:30 am because the screaming was making me so frustrated. So he stayed the night with her the next night (and it was a rough one). I was able to come back yesterday feeling a little more recharged. 

I will say that now that I know what to expect with the sleepless nights that I am a little more patient about it. And last night, our nurse's tech rocked her for a good 3 hours so I could get some sleep. 

Dru's gift of a new liver cannot come to her soon enough.