Day +30 October 22

No significant changes -YET.  We are still betting on a turn around with our baby.  She is tolerating all of her treatments. 

There were a couple of mishaps with her right PICC today.  While weighing her (5.55kg), her PICC sutures ripped out and the catheter backed out a bit.  The catheter also got accidentally partially pushed BACK in while the nurse held it  before I had a chance to clean and an X-Ray done -wouldn't normally push back d/t driving more skin contaminants back into the bloodstream.  She did not seem to be in much pain over this though.  Later when Stefan and I finally went to RMH to nap, they re-sutured her.  Having had no prior experience with her skin fragility first hand, the Doc pulled off a good piece of thigh skin when removing her PICC dressing. I am feeling pretty guilty for not being there to help now.  However, now the line is secure and although she has a new wound, her old wounds are healing beautifully.  That is good for infection control if the skin can actually act as the barrier as it is intended!

Today there was a lot of discussion about tweaking her care.  I guess it was found that her yeast was more susceptible to Caspofungin than Ampho B, but one of the research studies I read from Lisa's comment explores the idea that both can be used together without increased risk.  There were also lots of other great anti fungal suggestions and  thoughts that I would like to discuss at rounds tomorrow (today -it is almost 3 AM).  Thank you everyone for the resources and ideas.  The nurse on tonight liked the pro biotic idea and I am going to see if we cant do that through the G-tube and the essential oils thought is worth looking into as well.  Nurse Courtney was also considering other environmental factors that we could control such as changing out the bedding and Bair Hugger more often.  I used to wipe every surface down like lady Macbeth and have kind of let it go more as tiredness, stress, and sadness have started settling in.  Just like I am trying to do with the fungus though, I have to fight that and keep vigilant. 

The new BMT attending this 2 weeks is a man of very few words.  He only said about 5 words today but they were very good ones.  He had the idea to start her on a Statin (cholesterol med -Crestor) which has shown to decrease fungal activity in the test tube.  I like it; he thinks outside of the box!

So she has actually been pretty steady, knock on wood.  BP's a little challenging to keep up, temp OK, counts maintaining.  We have been able to control her pain.  She looks like a sleeping angel -such a sweetie.

Child Family Life, Carin finished Elle's DVD today of lullabies across the generations.  It includes Chloe singing a version of Twinkle Twinkle / ABC, Grandma Etelca singing in Hungarian, my mother singing a song she wrote for Elle, my dad singing a song he remembers his dad singing to him, and me and Stefan singing to Elle.  It was really very sweet.  I played it for her several times today.  It brought both Stefan and me to tears in parts.

Chloe went to the RMH Friday preschool, drew, played, and went to the October birthday party celebration at the RMH. Dad took her and got a few photos.  S is currently with the babe and I am going to retire with the hope of getting to the hospital early.  Goodnight and thank you everyone for caring about Elle.  Obama is coming to Minneapolis and there is a Home game tomorrow.  Going to be a traffic zoo!