Day 16

Piper continues to have fevers which go frighteningly high. Strangely though she is still pretty perky and happy and not bothered by it and her vitals stay normal. Just to rule out something fungal, she had an CT scan done today which revealed healthy and fungus free lungs...very good news. Piper also impressed me by obeying me so well and staying still during her CT scan and not needing to be sedated. I was not expecting that but I was very proud of her little self wrapped up there on the machine and watching me.
The fevers can be one of two things now ( unless something shows up in her bloodwork that hasn't in the last 36hours). It can just be a sign of engraftment and is totally normal or it can be a side effect of worsening CMV numbers. Because she is having no other problems, Dr.Chiang is not yet concerned. I'm not either because I learned a long time ago that there are very real and present things to worry about so I will worry about CMV if and when it produces problems.
Piper has been asking for water a lot today as well as eating those little Gerber puffs... They melt in her mouth so I figured I would start there until her mouth is sore free. They do not want to to replaced the NG tube and hope that she will begin eating and drinking at least minimally soon.
Counts continue to wiggle, not jump. And her rash looks the same if not better. I am hoping and praying it stays stable if indeed it is graft vs host (which they think it is) because they treat graft vs host with steroids and that is the last thing she needs with having already activated CMV.

It dawned on me today how much I am actually enjoying this season. And no I am not drinking to excess at the moment. There is definitely a worry and anxiety that comes from being in this setting and being apart from your entire family but this is proving to be a special time for myself and Piper. Thanks to the time and generosity of friends and family and loving strangers I don't stress about Chad and Linley at home and an able to simply focus on being with Piper. It's not unlike those first few weeks home with a newborn who relies solely on you and is fantastically needy and yet...somehow you miss it when they do sleep through the night and when they do accomplish tasks without you.
I pray fervently that my time with Piper is filled with all the moments and dreams I had for her when I rocked her so shortly after her birth but I fully appreciate this (supposed) to be heavy time for the joy that is is at this moment. If I don't have another 20 years to hold her... I will even more love these sleepless nights and slow days.
But I still do plead and ache with God for her healing and for life and for a future...nothing will stop me from that no matter how sweet the moment.