Day +27 October 19 & Day+28 October 20

Day +27: Had a better day -was stable with pressures and temp.   They did her Dialysis circuit change and her temp soared over 103! The dialysis keeps her temps way down all of the time so fevers are not spiking while on the circuit, but every time she comes off, the temps go up.  This was the highest by far though.

She got all of her dressings done and what is good in regards to her skin is that I have been slowly opening up more and more areas to air.  I place her limbs on a burn pad called Exudry (a tip from her primary nurse)with a little Mepilex Transfer directly on the pressure areas and "tent" the bedding so it is not in direct contact.  She now has all four limbs, both hands, and one foot exposed and they are all looking SO much better!! I also have a cup of air (O2 blow-by) blowing on her armpits and ketokonizole (antifungal) on the "cheesey" areas (sorry-gross).  I was never able to do this before because she moved so much and traumatized her wounds further.

Later in the day, we were honored to take part in a balloon release for Anabella, symbolic of letting go and setting her spirit free. It was beautiful and even included a short but poignant ceremony andher dad played Amazing Grace on a woodwind instrument. We watched the balloons float off into the skies, further and further into the distance.

Day +28:  As a continuation to the above, we attended Bella's memorial service this afternoon.  I never imagined that there could be such a beautiful service with not one floral arrangement.  The family wanted donations to go to PUCK for EB in lieu of flowers.  It was held at the conservatory at the Como Zoo with glass all around gardens and a Koi pond and the wind whispering through.  There were several nurses and respiratory therapists, family, the Edlings, and others present. The service was lovely and consisted of scripture, poems, an interactive portion that Stefan and I participated in, and lovely acoustic music.  The Ringgolds delivered flawless, gorgeous Eulogies and were so strong; they were the only ones holding it together.  I was very impressed and moved.  It was pretty tough, but such a meaningful tribute to a special baby.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Our special baby is fighting.  Her yeast dug it's fungal teeth into her and does not want to let go!  She is still growing out the yeast quickly and frankly, it's scaring the bajeezus out of us.  Her blood pressures have been soft and she is back on 3 blood pressure meds again. Her temps get low again and these are indicators that she is sick from the infection.  Also, yesterday her temperature probe that goes into her esophagus slipped out and the edge was cutting up her mouth and maybe her esophagus.  But her mouth had no blood today. The same principles still apply; prayers help the white counts to help her immune system to help the antifungals to help her. 

Another phenomenon that has happened today is that she has been so awake.  We could not knock her out.  She was wiggling and moving and looked uncomfortable and maybe scared.  She got more agitated when she heard my voice but calmed down almost instantly to touch, so I shut up, held her hand, and gently stroked her forehead.  Poor baby.  The nurse finally got her quiet and asleep with sedation. 



Keira, Ali, and Chloe in "cooking class"