Day 4
And the mucositis is here. If I was not able to tell solely by the phlegmy coughing, I would see for sure in the copious amount of mucous she is spitting up...and today it's tinged with blood, another sure sign of open sores down in her mouth and throat. Her eating has stopped all together though every so often she will attempt a nibble of this or that. The good thing ( is there ever a good thing about bloody phlegm???) is that this is totally normal. As I have said before, Piper will get much worse before those life saving cells kick it into high gear and start making her stronger than ever before. We just have to go through crappy-ville to get there.
Piper is officially neutropenic, meaning she has no white cells distinguishable. This (again) is the goal but it puts her at am extremely high risk for infection and we are being ever more diligent about bathing, mouth rinses and hand washing. Piper has not had much energy today though she did have time to pout when we ran out of dresses and nightgowns this morning and I was only able to offer her t-shirts...she really is the typical two year old despite how she may appear. Napping was elusive as each time she would fall asleep she would begin choking and that would waken her. Not shockingly she is no fan of the mouth suction but it is ready and waiting should she find It more a help than a bother. Piper has been given a dose of morphine tonight to allow her to rest and we will take each day and pain as it comes. Around here nobody looks at you like your nuts for requesting lortab or morphine, in fact they prefer you begin giving it at the first sign of pain rather than allowing these little bodies to work harder than necessary.
It seems she may be working on a fever but it's kind of dancing between the real deal and playing around. If she does spike in the night they will draw blood work and begin antibiotics while waiting results. And she is in need of platelets so that will be given sometimes after the midnight labs are read. All in all its been a decent day. Some smiles and silliness and attitude, yet still many signs that Piper is slowing down.
Seven years ago when I first married into the Needham family I learned of the southern tradition of eating a specific New Years meal...collard greens (money), pork (moving forward), cornbread (happiness), black eyed peas (good luck) and peach cobbler (health) for dessert. Each year that we were around them, I would chow down on his Granny's amazing cooking and laugh about the seriousness some take tradition. Well, this year I had NONE of the above foods for dinner and I am hoping this will be the year I see SOME of the above blessings...reverse psychology from this tired and yet still very optimistic woman.
We missed all of u at Sam's yesterday. Prayers still going up! Xoxo
ReplyDeletePRAYING!
ReplyDeleteyou always were one to break with tradition you little rebel :) I love you all so much and pray the new cells miraculously (& quickly) are integrated throughout her entire little self. Would you like some laundry done, or dresses brought? Anything! you just name it...
ReplyDeletexoxoxo
miriamjoy