Day +15 October 7

Today is Baby Elle's 10 mo birthday!! Happy birthday sweet girl! Every month is a celebration now.

She continues to open her eyes, but not tracking or focusing.  We hope her little brain was not affected by those super low pressures last week.  Her nurse was not worried although she was not perfusing oxygen carrying blood well for a long time and the next day she went into acute kidney failure and needed dialysis. Her bilirubin ~17 down from ~19.

Her AM weight was 6.8kg and her evening weight was 6.0kg but we aren't sure if the morning wt was accurate.  She has not peed yet which she needs to do before they consider reducing dialysis but does look much less puffy, less wound drainage.

She is chewing through platelets like crazy and gets platelet infusions (pushes) ~twice daily. Hemoglobins are stable. Her blood pressures today keep dipping down on to 70s over 30a, even as low as 60s over 20s and mean arterial pressures (MAP) in the 40s.  They want the MAP in the 50s, it is a measure of perfusion (the blood circulating with oxygen around the body).  She had to get fluids increased then finally her Epinephrine was increased. 

Her blood infection was identified to be Pseudomonas (no surprise) AND another uncommon bacteria called Achromobacter.  They are both treated by Merripenem which she is receiving.  Her temperatures are still very low sometimes 93 or 94 degrees still, but we are able to bring them up.  The Prisma is the likely the culprit but also, the sepsis may play a role becuase her immune response post BMT is altered.

Good news; her counts are 0.3! Her immune system is sloowwly starting to rebuild - yes! And she got a visit from Dr.s Tolar AND Wagner today (love those docs).  They were actually pleased with her status as was Dr. Cooy, the current BMT on service.

I enjoyed Elle much of today and Etelca, Stefan, and Chloe enjoyed the beautiful indian summer weather.

Chloe gravitates to animals, she said "I miss my doggies"(so does her Mama!)

I know she looks bad and it all sounds dismal, but she is holding tough and she has so much spirit; you can sense it when you are near her.  I have such hope and such a positive feeling even through this scary time.  I feel God with us and Elle's Angels around her.