Another good day.
Another chance to enjoy Piper and not live fearfully.
Another chance to think and dream of more good days to come.
Piper is doing well...so well. Last night she slept all the way from 11:00pm until 10:00am, and even when she would awaken she was tired enough to go back to sleep without needing me to hold and rock her. I asked them to keep her fentanyl dose at the same rate she runs during the day and chose to forgo the benedryl and hope for the best. And we got it...her pain pump has the option of a "boost" when she seems in more pain but that has not been used in over 24 hours...we are planning to begin the weaning off process tomorrow...this is not a quick process as her body will continue to ache and hurt especially as her counts begin to recover. She still napped from 2:00 until 6:00 this evening which explains why she is still awake watching VeggieTales and why I caved in to a Peppermint Mocha at 7:00 tonight...bedtime will be a while.
The steroid creams seem to be helping as her rash is all gone on her head and her back and arms and the portions on her legs and torso are beginning to fade away. Her poor little face looks like she has been in a bar fight as each bump and scratch she gets just sort of festers there under a layer of bacitracin. She is very red on her cheeks but it's thought to be simply as irritation to the saliva and such...no concern but lots of triple antibiotic cream. She coughs often and has some white in her mouth so they are treating for thrush but her lungs continue to sound clear. All of her bodily functions continue to stay within a normal range, her weight included.
The only concern we still have is her CMV levels. Pipers CMV copies jumped from 100 to 3,100 in the course of 7 days...this is not shocking but it is reason to be proactive. She receives a specific CMV sensitive antibody every other week and this has been bumped to weekly. Because Piper has an allergic reaction to IVIG she is given Tylenol, benedryl and solu-medrol prior to each infusion which has proven effective. Unfortunately this is very much a catch-22 because the same solu-medrol steroid which keeps her from having a reaction is the same steroid which will keep her immune system compressed which is exactly how CMV thrives. So Dr. Chiang chose to give her a half of the dose of solu-medrol and hope it would still keep Piper calm...and it did. This is very good news as it allows Piper to have all that her body needs to fight off any more CMV copies. I imagine they will attempt a smaller dose next week and hope for the same results. She will continue to have labs drawn to check the CMV levels each Monday so we have results within 48 hours usually...let's pray she will hold steady or even better, knock the levels down some.
Pipers white count is at .2 but slow and steady is how she rolls. Until she has higher white cells she will not have an decipherable ANC...and she will need to have an ANC of 500 to be considered engrafted. Hopefully we are staying ahead of the CMV enough that her ANC will develop in time to really keep it at bay. Remember please, engraftment only means that her body is beginning to recuperate...we still don't know that she is producing donor cells or her own cells. And either way, she has a long way to go before she is out of cautions way with both life threatening infections and the chance of leukemia still around or relapsing. Right now Piper is playing with her play camera in the bed and dancing to music and giggling. She walked twice around the nurses station and while she was definitely shaky she did it and she continued to play while standing in the room when we returned. She is loving the $3.48 shoes I picked up for her the other day and then chose to wear a shirt of mine to bed...she is definitely a two year old despite all that she has been through and all that she struggles with.
She amazes me, even when she is bossing me around.
( Oh, and I would love to be posting pictures while I am posting words but I cannot for the life of me figure out how to load pictures on my iPad...I have the thingamajig that allows me to download them from the camera SD card but for some reason it wont allow me to attach them to a post...even if I have taken the pictures with the very iPad I am attempting to post on....I don't get it but let me know if anyone does.)