September, 2013, 2nd week in the ICU.
Things were good, considering (“good” was ALWAYS “considering”).
Quick review of two weeks (only 14 days) in the ICU….Septic Shock (organs shutting down, they saved him, Praise God); Breathing Tube trauma; BK virus continues raging(blood and blood clots in urine); ALL organs on some sort of machine to assist functioning; GVHD with his new bone marrow attacking his body with enormous, painful blisters on his back; At least Four different Bacteria/Virus/Fungus detected and treated due to low immunity (and having to lower it further to fight GVHD); Once breathing tube removed, still fluid in lungs, broncoscopy required.
But….I believed things were “good”.
In reflection, it’s what allowed me to care for him, to shower, to laugh with the nurses or his dad, Charlie, to be hospitable to visitors and family, to be a long-distance parent and wife(from 25 miles away) to my family. But, I do believe, that I was a better mother to him than the mother who now sees now, in my writing, that things looked rather bleak even though things were improving….
But “good” meant: He was breathing on his own with oxygen numbers rising, they expected him off dialysis in the next day or two, his bacteria was responding to treatment, the GVHD blisters on his back were GONE!, they had removed the urinary catheter due to complications due to clotting, and he was awake (sort-of, sometimes). And in One Day, he was scheduled to go back to the Bone Marrow Transplant Floor!!! He NO LONGER NEEDED INTENSIVE CARE!!!! Our hopes were High and Confident.
Charlie could fly back to Arizona, I would stay in hospital until Cory was completely out of the woods, but would return to work in a couple weeks…Cory would continue to get stronger and better and numbers will rise….Woo! Hoo! Then he would come home! Ahhh, it was all planned out ( in my head) and it’s all I saw. Once HOPE moved into my brain, watch out. Then….
He broke out in PURPLE BLOOD BLISTERS , all over his body. Blood Blisters. Everywhere.
At first, no one said much. We just assumed more GVHD funky blisters. These blisters didn’t distract us from the HOPE from all the improvements! We were still in “WOO! HOO!” mode. Just another speedbump…
But then to find out They. Didn’t. Know. Why.
GVHD doesn’t do this. Bacteria doesn’t do this. They don’t know what does this?????? Cincinnati Children’s Hospital has never seen this. Wwwwhhhhhaaaaaattttttt??? WHAT?
These blisters caused him EXCRUCIATING pain….worse than Ever. We.Couldn’t.Touch.Him.
None of us could Touch him.
But there were things required to Care for him that required us and the nurses Touching him. We had NO CHOICE at times to Touch him to care for him. And it tore us to pieces every time….He would CRY OUT and
MOAN in Agony,
real live AGONY….
and this was medicated!
The Guilt and the memory still bring me to tears as I write.
I remember a moment with Charlie where we both were upset with pain for our child…
it was Primal…
saying ” WHAT CAN WE DO?? , What can we do???
It was our souls speaking to one another….helpless for our child we had brought into this world and watching in such intense pain. Pain. Pain….PAIN!!
Really, I can’t describe it.
They put him on more pain medication again…they asked if the Infectious Disease Team could biopsy him? …..Take little round circles of his skin out of him to determine what this was?
“Will it Hurt”, we said?
“Yes.” they said. We heard “YES!”
We had witnessed him in so much pain over the preceding three days. Pain that you could not imagine watching your child go through. Suffering that you cannot envision.
I.Cannot.Describe.It. because I could not even have imagined it, ever….EVER. EEEVVVVEEERRRRR.
So the question, “Will it Hurt?”
Such pain that we questioned a simple biopsy of his skin.
We didn’ t want to be responsible for one more iota of discomfort for him.
We agreed, after much conversation, reluctantly, thinking the benefit of diagnosis outweighed the additional pain.
We signed. They did the biopsy.
Charlie flew back to Arizona, because he’d already booked the flight when we thought that things were Getting Better.
He waited waiting for word, since his flight was already booked during the Hope Phase.
I would be calling him very soon to come back to Cincinnati.