Go Phoebe go

Phoebe is out of the ICU. It was a short stay - just twelve hours until we were back on the regular floor. In typical Phoebe style, she had a room full of very worried doctors, but she appeared to improve without any intervention as soon as we entered the ICU. In fact, as we wheeled her in her bed through the halls towards the ICU she perked up and pointed out the murals and pictures on the walls. It was and is very serious, but in that moment, it seemed that Phoebe just wanted to take a ride outside of her little room. 

We are now back on the regular ward and things are slowly improving. We are cautiously optimistic. Terrified but always hopeful. Phoebe is fighting and so we are too. 

Here is what we know ...

What we once called a rash is fungal

lesions that cover Phoebe's face, legs and arms. Most have turned black and are angry and painful. It is as awful as it sounds, but they are not as painful as they once were and there are no new lesions which is a good sign. They do have a lot of healing to do and they make Phoebe sad. When we ask her if she is feeling better, she says "no, because these spots are just not going away". 

The granulocytes are helping to temporarily boost Phoebe's immune system which together with the many medicines she receives is helping to clear the infection, but she still has very few signs of count recovery. We need count recovery and in the absence of this, Phoebe will probably continue to receive granulocytes. The plan is very much one day at a time. 

The infection/inflammation marker in Phoebe's blood is coming down and took another big jump in the right direction today. 

The CT scan of Phoebe's lungs shows the same small lesions from the previous infection and some other "gunk". The granulocytes were given right before the scan so things may look worse as they cause inflammation. 

We finally have negative blood cultures. 

Phoebe is still needing blow by oxygen, mostly just when she's sleeping and her breathing has improved. 

Today, our infectious disease doctor told Phoebe that she was their "most improved patient". Go Phoebe go. 

Today, Phoebe colored a picture and wrote her name for the first time in weeks. 

We love her so much. 

We are following Phoebe's lead and hopeful that she will be able to leave the hospital soon. We are still isolated, so when Phoebe is in patient she spends every day in a little room. It's hard and she usually shuts down and refuses to leave her bed. She is depressed and some time outside of these walls would do a world of good.

Mae is busy making friends and dates to colour with many of the nurses. She is surrounded by love, support and friendship and for that I am so grateful. Phoebe's nurses are beautiful kind souls who recognize her for the unique little person that she is and care for her with incredible patience and understanding while always making time for Mae. 

Thank-you all for continuing to think of Phoebe and our family. Your words and kindness help us through.