Piper was discharged on Thursday night. Friday and Saturday were spent in the clinic all day... And by all day I mean ALL DAY. Eight hours one day and then 11 the next, all for things that truly should have only equaled a 4 hour visit max. Each day outpatient requires Chad and I to balance the 8 oral medications she takes multiple times daily plus the two types of thrice daily Iv antibiotics and the constant TPN being given. Being on constant fever watch and attempting to keep Linley up to date with schoolwork is slowly wearing us down. Yesterday in the clinic she began running a fever but the attending doctor chose to allow us to go home after taking vitals and giving her a dose of Tylenol because everything else was fine.
So we walked across the parking lot to what we call home and she began to smile and do a little laughing and by the time she zonked out at 1:00am she was fever free. I got up to check her at 4am and she was running about a 99 degree fever but when I woke at 6:00am with Chad to hooked her up to her IV antibiotics she had jumped to 103.1. Obviously we called the doctor as we were packing up and Chad took her back inpatient where we currently are.
She continues to have fevers which respond to Tylenol just fine but also bring a heart rate of 160 or so with it. Her blood pressure is elevated but its her oxygen that we are really seeing struggle. She will drop to the 70s and they finally had to resort to the nasal cannula which has helped some but only when she is using a large amount of oxygen. A chest X-ray this morning showed some fluid on her left lung and as she has continued to struggle throughout the day, the doctors are putting in orders now to have a second X-ray given to see if things have worsened or not. She has had lasix as well as having multiple blood cultures done and stool and urine samples sent out.
Piper slept the entire morning and when she woke up she has been less than happy but not in pain. She will watch movies on my iPad and snacked a little on mac and cheese but something is definitely off. At this point they are keeping a very close eye on her.
My response to all of this; the leukemia, the scary vitals, the lack of sleep and mental olympics we are required to constantly take part in has been tears.
All day today.
I cannot stop crying and everytime a well intentioned nurse asks me if I am okay, it's all I can do to not lose it.
I'm really not okay but crying is all I can do about any of it so that's what I have done today. That and praying to once again have those sweet days with two girls and the ability to go outside and the desire to walk around and the hope that someday all of these horrifically tiring days will be in the past as I am able to enjoy these girls the way I desired to when I first planned for a family.
So much of this is just plain unfair and unexplainable and that does nothing to the immense amount of exhaustion and worry that rattles me on a normal day much less the string of days we have been having lately. And while we are constantly being supported, this lays on Chad and I...we both want and need to be the ones to care for both girls and struggle to stretch ourselves in ways we never hoped to have to stretch.