She continues to keep her fevers down though not in a normal range but there have been no spikes and thus, no tylenol given. Pipers rash is worsening and I am attempting to not be concerned. Graft vs host disease can be a serious situation and I am fearful of dealing with it beyond it being a bothersome rash to Piper...Dr. Chiang doesnt want to begin her on steroids as it can compromise her eligibility at St. Jude's and that is the ultimate goal at the moment. And Pipers cultures grew something which means there is or was, an infection in her little body. They havent gotten the sensitivities back as to what it is but she continues on antibiotics and we are hopeful that will fight for Piper until her counts begin to rebound from last weeks chemo and before next weeks preparation of treatment.
With all of these fancy complications my sweet Piper is rolling around with, we are unable to be discharged to head to St Jude. They would rather have her medically transferred so tomorrow at 9:00am the St. Jude transport ambulance will be picking myself and Piper up and we will begin the 8+ hour trek northward. When I inquired as to how exactly one goes about transporting a two year old in the back of an ambulance there were talks of gurneys and 5 harnesses and I am fearfully confident that they don't mean a 5 point car seat harness...I imagine we will find out soon enough. In the meanwhile I am downloading many movies and books to the iPad and I packed a big bag with snacks and games and other things to keep meltdowns to a minimum.
Here's hoping Piper will be able to hold herself together as well. :)
Chad and Linley will be close behind the transport and hopefully we will be able stop as often as our nerves require. At this moment Piper is still quite awake although I am quickly fainting. Despite how tired both Chad and I are in this moment and all others, we both know there is quite a fight up ahead. Busyness and worry and exhaustion will soon be a part of our daily world, even more so than it is now. None the less we remain hopeful that this is the cure for our girl and we are gearing up for the necessary trials to come.
Mainly we are confident in the direction God is guiding us and we are so very blessed to know this God who leads our every little step.