Wednesday, February 1, 2012
And Piper is a free woman. Well, free-ish. She will still be closely monitored at the clinic every other day but apart from that she is on her own schedule and doing her own thing. I wish I could say we can get back to living a normal life but the fact is that she is not able to go anywhere but our apartment here at the Ronald McDonald house and to the clinic. And even in the journey between the two she is required to wear a mask and has learned to keep her hands to herself...thankfully, she is super obedient about these two things.
Piper was incredibly ready to leave yesterday. She happily put on the new outfit I snagged from the clearance rack at Target and requested her mask and out the door we went. The drive to the Ronald McDonald house was sweet as she pointed out the birds, the trucks and all the little things she has missed after 44 days of being isolated from every aspect of the outside world. She's never been so excited to be buckled into a carseat.
It was 8:30 at night before the home health nurse came and showed me how to hook Piper up to her night time fluids and her IV gancyclovier. I cannot think of the time I was more tired than last night after attempting to remember all the details and schedules that are now my sole responsibility. All of this is more than a little overwhelming while juggling her medications, creams and fluids while still encouraging her to both eat and drink throughout the day. So while I am thrilled to be on our own, I have a renewed sense of appreciation for the nurses who do all the hard work throughout each day.
Today was Pipers first outpatient but clinic visit and it went well. She is still showing many signs of stranger anxiety not that that is much of a surprise. Thankfully, this visit was fairly simple and the only thing to bother her was the removal of her NG tube...we will be attempting to have her eat enough to maintain and if not by next week we will restart the feeds at night. Today she snacked all day long but time will tell whether it was enough or not. Her liquid intake is very low, thus the overnight fluids, do please pray she begins to feel thirsty and that she will restart the drinking of her pediasure as she did before transplant. Pipers liver numbers were elevated today but it is supposed to be a common problem with the diflucan she is on do that has been stopped for a little while. Her cyclosporine levels looked great so we will continue at the dose she is on now.
Please continue to pray for Pipers body to be producing donor cells as well as her fluid intake. And rest...please pray for some for both of us.