I'm back. I went home Monday night to spend some time with Linley and get her prepped for school resuming. Also, to walk around barefoot, enjoy the fresh air and to do laundry. All things that I miss massively by being here at the hospital. All things that hopefully are around the corner...closer and closer each day.
After a few rough days and an increase in the fentanyl, Piper has perked up today. From Saturday until this morning we saw much more mucositis, a lot less sleeping, high fevers and a general feeling of exhaustion and frustration. Both for Piper and for Chad and I. Today Piper is feeling a little more perky. She has given us a few sweet smiles and has sung a few sweet songs. Don't get me wrong, she is still very much dealing with the side effects of radiation, chemo and of course this transplant. Her ANC is still down, as it should be. The cultures from Mondays fever has not grown anything so that is a huge sigh of relief although she continues to randomly have low grade ones. And surprisingly, Pipers CMV levels have actually gone down to 100 from 700 last week... I was hoping to just keep them from sky rocketing until her counts began to recover...but this was a good shock to us. After receiving platelets Sunday night, the amount of blood we are seeing in her saliva is less and if you really want to know more than you need, her stools have gone from almost black to the normal yellowy loose mess we know and love. Liver and kidney functions are staying within the normal range and she responded well to the dose of Lasix given a few days ago to keep the extra fluid off her little body. Sleep continues to be a struggle as she wakes often in the night as well as the fact that she has gotten on the typical hospital schedule of staying up majorly late and sleeping until 11:00 the next day and napping sporadically at best. This would not be nearly the issue if Chad and I were on the same wonky schedule but we are still very much running back and forth between Piper and this life and Linley and her life.
So that's where things are. Piper is a trooper. I though, am at a loss as to whether I want her to get more side effects as evidence of sorts that this is working or whether to count my blessings that she is handling this on the good side of ugly. This whole wait and see method is incredibly difficult for a woman like me who would much rather be the one making choices and bossing things around than the one who is hoping and praying for the best while having nothing to do with the details. Keeping things out of my control is incredibly frustrating but I am learning a lot about trusting God, trusting Chad and trusting the doctors and nurses who have been put in this place for Piper.