Day +41 November 2

Day +40 post transplant and +38 in the ICU. 

Elle still needs all of her blood pressure meds and fluids intermittently to keep her pressures up.  She is still on Prisma for dialysis.  She still can't take feeds in her gut so she is on TPN and lipids (IV nutrition).  She still has yeast although it is taking longer to grow out this time.  She has kind of plateaued. 

She had an abdominal ultrasound because it turns out that she needed a CT with contrast and her kidneys could not handle the contrast even with protective medications.  The kidney docs said NO.  The last time she had an ultrasound, she bled and bled so we were very hesitant to do another, but the Edlings had a great suggestion to use Magic Gel Sheets, a wound dressing that barriers the skin from the probe but still allows the U.S. to get good images.  It worked and she did not bleed, but it was uncomfortable for her.

The chest Xrays revealed no issues with yeast collections in her upper body, but they wanted an abdominal ultrasound to confirm the liver, spleen, kidneys and bladder had no visible yeast colonies (balls).  There were none.  Also, the blood flow in her liver is moving correctly, indicating that she no longer has VOD!  These are both bits of good news. 

However, she has been fighting this yeast for nearly 3 weeks now and she still has these low blood pressures.  I'm getting the feeling that some of the doctors think she is circling the drain.  I don't think so, Stefan doesn't think so, Dr. Tolar doesn't think so, and I don't think Elle thinks that either!  She still moves and looks and squeezes my finger like a little fighter.  She breathes over the vent sometimes, she holds her legs up sometimes, and she even coughed yesterday after being suctioned.   We are not willing to stand by and let her slip away when we know there are still lines that can be changed and solutions to be found.  We are not giving up and I hope none of you are either.  If the time comes when she is tired of fighting and needs to rest and be comfortable, we will help ease her path, but she isn't there now.  Another junctional baby we know was at a scary point several times during his hospital stay and he is doing very well now -yes Daylon, I'm talking about you...We will keep strong as long as it is appropriate to and see what Elle can do.

In other news, Ginger and Destiny are here - yay!  Already, I am getting to bed earlier.  She just so fluidly gets things done as we talk and I was in the bedroom with the girls and came out again and the main room was all clean, dishes done, and laundry done.  I love Stefan's sisters (Don't worry Lis, you are still number one sister)!

Chloe and Destiny are having a great time together too.  Destiny has grown a whole head taller since I last saw her; way taller than Chloe. There was a small mishap in the tub earlier with a little splashing and crying involved, but they both apologized and forgave each other and all was right again.  They are so cute.  I thought Destiny would want to sleep in Chloe's bed with her, but she wanted to sleep with her Mommy.  They are both asleep now, little angels. 

Chloe and Destiny hugging in matching PJs -The girls look like frogs themselves, I am having camera and computer trouble today.