Day +12 October 4

A much better day today.  Elle is more stable.  Her new line is working well and her blood pressures and temperatures are stable.  With dialysis, she has an even amount of fluid going in and out of her body so her fluid balance is also stable.  She looks less puffy and toxins are effectively being filtered out of her body.  We did not get a weight yet, but I'm sure it is not too bad since dialysis has reduced the fluid in her tissues.  Her chest xrays have shown fluid in the lungs and areas of the lung aren't exchanging air well right now, but also stable.

She had an ultrasound of the liver and kidneys.  No VOD! yeah.  So we escaped that one for now.  Her vessels in her liver are working fine and not occluded.  It is slightly enlarged though and her bilirubin is still high, but it is lower than yesterday (11 down from 14).  

The other news is that she was taken off of the Vecuronium for a couple of hours to make sure she could still respond and twitch normally.  Also, the hope was that allowing her a little normal movement and wakefulness may allow her gut to move, shift her fluids back into her vessels, and / or help her blood pressure. She twitched, wiggled, moved a little......and opened her eyes.  I was just wishing and praying to see her eyes.  She blearily peeked at me from under heavy, half open eye lids and blinked them closed again.  She did this several times sleepily.  Later for her dad, she even tracked him.  JOY. 

Can you see her barely open eye?  She got wise and closed them for subsequent photos

She appeared asleep, but when I touched her hand, she squeezed and held on , if I moved, she tightened.  So I have stayed close for hours to hold her hand and talk to her. She has never had her hands free for an extended time before because she would damage them too much, but sedated, we have been able to let them breathe...and the skin on her fingertips has improved.

It isn't time for her to be awake yet though, so she will continue to be sedated and Vec'd.  It is still a hard time with all of the lines, tubes, swelling, dialysis, mucositis, pain, etc.  She should sleep through it, but it has been wonderful to see her again; and Chloe liked it too. 

I look vacuous, but Chloe is cute

Chloe loves her quilt and pillow made for her by Cindy from church back home