Today we stand 9 days until Transplant so we call that day -9. Each day we get closer and count down until Transplant day, which is considered day 0 and subsequent days are +. As in day +1, day +2 and so forth. Hopefully Piper will be able to discharged around day+30 or so and will be able to return home at day +100 or so. And will be cancer free still at day +365 and heading down a path of health. All of that is a long ways away and I will go mad and have a panic attack if I spend too much time thinking about all that is ahead. Sort of how I have a panic attack in my brain each time I have to park at the parking garage here which goes down a ridiculous 4 levels underground.
Today was typical of any experience with two year old, medical stuff, oh and Piper. She has been fighting off a cold for a while now...lots of snotty noses, some coughing and congestion. No fevers and each doctor who has seen Piper in the past few visits has agreed that it will pass. Of course, this morning after dropping Linley off with my mom and dad and unloading Piper and her paraphernalia we made it upstairs to surgery only to be told she had a fever. This began 2 hours of her being poked, prodded and checked out...only to finally watch the fever go away on its own. I know everyone was holding their breathe...the amount of work, coordination and detail that goes into preparing this transplant is amazing. One little kink, like an infection, can throw everything for a major loop. Praise God the surgery was a success and Piper joined us in the transplant unit a little before noon. She was pretty hungry and sleepy so after a lunch of tater tots, pedicure and pizza she took a 3 hour nap. Unfortunately because of not being able to eat this morning her zofran was missed and she threw up when she woke from her long nap. That was the turning point of the day because from that time on she was moving around the room, coloring and playing...mostly happily. Piper is especially enjoying using her double lumen lines as drum sticks on whichever solid surface is closest...silly girl. She will be in isolation in her room until the cultures taken from today clear her from the flu or other respiratory funks. Once those clears she will be allowed to roam the halls providing she wears her mask obediently. She will not leave this unit except for tests and radiation until she is discharged. Chad and I are able to come and go and guests who are healthy are free to visit but she will be slowly feeling worse and worse over the course of the next few days so that's not really appealing to most.
Pipers room is small but comfortable. There is a playroom across the hall once she is cleared to leave the room. The family lounge has an oven as well as the fridge and microwave. And the laundry room is around the corner. I think we will find ourselves adjusted just fine here. And thanks to the amazing generosity to many wonderful friends we have the iPads and FaceTime with which we were able to see sweet Linleys face this evening. I cannot tell you how incredibly great it was for all four members of this family to smile at each other...and make faces too of course. We are wild and crazy like that.
I've been asked a few times for the address here and Pipers room number. We love to hear from y'all so please feel free to send Piper cards and treats...she cannot have stuffed animals or fresh flowers or fresh fruit though so please keep that in mind for her safety.
Tranquilizers for mommy and beer for daddy would not be returned...just saying.
Childrens Healthcare of Atlanta at Egleston
1405 Clifton Rd. NE Atlanta GA 30322
Room 3205 Aflac Transplant Unit.
Thanks for following us on this messy, tiring, grace filled journey.