Piper is being so very Piper. And when I say that those of you who know her and know how she rolls, well...you are rejoicing. Because Piper fights and struggles and thrives when people say she shouldn't be able to.
She is doing better.
A little at a time.
We were warned to take each day here one at a time. And you truly have to. When your day is difficult then you weep often and pray often... When your day is softer you will laugh a little more and remember to praise while praying. It's the only way to make it...an hour after an hour and day after day. There is nothing, I repeat nothing, easy about watching your child breathe on a ventilator. Nothing makes a mother cry harder than seeing tears fall out of your sedated child's eyes and without a doubt, holding your child's hands without them holding you back can reduce one to a puddle of emotions.
But today...today was good.
Today Piper is "stabilized". She is "cresting the hill, we believe". While we are not out of the woods by any means, she has sprinted through the thicket and on towards the sparcest tree line where she (and we) can begin to hope for healing. Yesterday morning she was having bp that would swing from 165/140 down to 55/35 in less than 60 seconds. As a result of this she was on the highest setting of dopamine possible and even a small dose of epinephrine. Her oxygen was constantly dropping due to large mucus plugs clogging her ventilator and her weight had ballooned to 14.6 kilos from 10.8 when she was transported from the BMT unit to here at the PICU. She was still on an decent level of oxygen and her volume was small, down in the 30s and 40s. And to top it all off she looked sunburned and and was still having fevers every 12 hrs or so.
Today she was beautiful. I believe a lot of it is credited to the doses of Hydrocortisone she began receiving and I have mixed feelings about that that I will address after I list the ways she has turned things around. Her bp stays constantly around 105/75 and her heart rate averages 100 bpm. Her oxygen is staying at 97% despite having the ventilator turned down to 38% and her volumes have increased within the perfect parameters. She has had no oxygen stat drops and no need to be "bagged" and helped to breathe above and beyond what they are requiring her to use of the ventilator. She is tolerating her respiratory pt and while she still sounds very "junky" in her lungs she is moving saliva out with the aide of the suction straw. This mornings X-ray looked a slight bit better than yesterdays and the days before. Both the dopamine and the epinephrine have been totally turned off and as her bp has remained stable for almost 24 hours she has been able to tolerate a lasix drip to begin to wean some of this fluid off her little body and thus, the pressure off her lungs. She's been stable enough to be rotated from back to left to right sides every two hours and her stats stayed normal throughout me giving her a bath and lotioning her limbs. We have begun small range of motion physical therapy and she is currently wearing her orthopedic boots to help the muscles on her feet stay in a normal position and not aggregate foot drop any more than we need to. There is still nothing growing on the cultures from her lungs.
The preliminary results from Pipers day 7 chimerism test showed 95% my cells,1% her cells and the rest were her first donors cells. This is good. Unfortunately, she is finished with the IL2 for good and the hydrocortisone is not friendly with NK cells...though less aggressive than other higher doses of stronger steroids. Piper will have another chimerism drawn on day 14 which will be on Wednesday and my prayer is that there continue to be mostly my cells fighting away despite this hurdle. As we wait for her counts to recover, the doctors have multiple plans for each situation... Whether she has blasts still or not. They were very clear that this is not the end of her treatment but that once she is strong again and ready to keep fighting, they will be ready to fight with Piper. The goal is still a stem cell transplant and a cure she deserves.
So our prayers are steady improvement with bp and the gradual weaning off the ventilator, that the NK cells continue attaching bad cells for a while and that her recovering blood work is leukemia free. You are all our support system. We are weary but encouraged when we read the notes you leave on here or Facebook. We soak up the texts and the voicemails and emails that come our way.
Thank you for that... For praying that Piper can indeed fight again leukemia despite this attack on her sweet body.