Day +32 October 24

Baby Elle is hanging in.  They stopped the vecuronium (paralytic) and did a trial reducing the vent rate to see if she could handle it and in the words of the ICU Doc, "It failed miserably".  She became acidodic at her her first blood gas, meaning she needed to be on the high rate of the ventilator to maintain her body's safe PH.  That is OK, she just isn't ready for that.  It was decided to keep her off of the veck though.  We thought she moved while on it -wow, she really moves without it; hands, arms, shoulders, legs, head.  And she opens her eyes wide, looks at us with focus and clarity.  She is still so much IN LIFE, very much with us and fighting to be better.  Even the Docs say she has an amazing will and fight considering what she is undergoing. We love that, but still want her sedated for comfort and protection of her breathing tube and her wounds.  She still gets agitated and calms when I (or her dad) hold her hand and when I put my hand on her head.  Today, I just wanted to be next to her, available to hold her hand for most of the day.  I am at RMH now and wishing I was with her.   I may go keep S company after this.

So she is off of dialysis for 12 hours right now to free up a line so that each port can be alternated doing the Ampho lock.  Anti fungal will be flushed and locked into the line in hopes of killing any fungal colonies or bio-film from each catheter.

We are going to continue to rack our brains.  These Docs have big, knowledgeable brains, but they think about Elle for part of a shift and she is on mine and Stefan's mind 24 hours a day - yes even in sleep.  I dreamed that I fell through a water bed that became a deep, gel pool and that I had difficulty reaching the surface and my brother's resin covered painting that he had created 20 years ago fell to the bottom of the bed pool and was nearly ruined.  I felt so guilty about ruining the painting and felt very worried that other people, especially kids would fall in to the gel pool too.  I really am trying to come up with a good gel-type pillow for Elle to keep her skin safe and make her comfortable, and I am afraid of failing her. I think that is what that crazy dream means.  It occured to me today, that if this was the president, there would be even more creative interventions until the president was cured. So in my mind, our baby is "Ellebabma". She is our VIP and we are going to keep pooling ideas until we think of something brilliant together with the care team and those of you who are giving us great suggestions as well.

Stefan and I are doing ok though.  Dad really helps, Chloe helps, and everyone's prayers, love, and warm thoughts help.