My son in the ICU: No showers, No answers, No can do.

Early September, 2013:

I’m wearing the same clothes I wore when I drove 90 miles an hour to get to Children’s Hospital three days before.
After the Saints saved him, I found a chair and pulled it to the side of Cory’s hospital bed, held his hand, and sat. And sat. And sat….I Just stared at him for days.
Eating was not a thing, showering was not a thing, brushing teeth was not a thing, and sleeping was not a thing. I mean, I slept with a pillow on him and my head on it…sometimes.
I’m sure I was a little delirious, but I remember people coming and going, and I remember my mother pleading with me to lay down and get some rest, and I remember his dad, Charlie, arriving at some point.

Etched in my brain is Cory. Bald, hairless everywhere, with a breathing tube coming out of his mouth connected to what looked like miniature drain pipes. White medical tape on top of and under his mouth, holding the breathing contraption in place. A feeding tube down his left nostril into his stomach. A Pic Line covered with bandages and tape in his left arm near the shoulder with more “lines” than I could count, looking tangled and feeding sedation and life-saving medication and blood and platelets into his body.
An IV in his left wrist with more medical tape and more of something else (I couldn’t keep track) into his bloodstream. They could only put so much into one place.
His right arm was still in a sling and couldn’t be used as an access point for intravenous treatment, because the cadaver humorous bone in his right arm was broken…(long story for another cancer)…
He had a “pulse ox” taped to his left finger, he had 3 heart and respiratory monitors stuck to his chest, and he had a catheter.

And he had his glasses on.
Just in case.

I remember thinking so many times, “How can this be?”

But it was.

He very quickly developed blisters all over his back. Some the size of a fist, filled with clear or yellowish fluid, and they opened up, and were a dangerous and painful thing. Skin was prime property for the Invisible Evils…Bacterias or Virus’ or Fungus’…to make their way into his body.

(This is a large blister under my finger that I was trying to show the size of  to text this picture to his doctors.)

We met one of the heads of the Bone Marrow Transplant Unit. Cory was now her patient. She is absolutely beautiful, put together in well-thought-out stylish clothing, a gorgeous Lithuanian accent, and a lab coat. She had showered, brushed her hair and changed her clothes, evidently. It’s the first time I became aware that I hadn’t.

“So. Hmm. Hmm. Hmm….”, she said looking studious as she stood at the end of Cory’s bed . He was sedated, which is common when on a ventilator. She looked at him for too long in between sentences, seemingly giving an indication that she was stumped. “Well, he had a bacteria come up on his labs that caused the septic shock….got into his bloodstream…who knows?  In those long showers? Who knows…..We are treating with antibiotics, his organs have taken a beating, so we will keep him on dialysis and the ventilator. If all goes well, we will take him off the ventilator at the end of the week.” She seemed very matter-of-fact… “no funny business”, I could almost hear her saying from her demeanor….and I’d never met her before. But I immediately trusted her.

“But those blisters…I don’t know.”, she says, pursing her lips and shaking her head. —-(I feel my heart sink. I need them to know. They are supposed to know!)— “They could be from GVHD(Graft vs. Host Disease–the immune system attacking the new body it’s in) or it could be the Septic Shock. They look like GVHD, but they are only on his back??? Doesnt make sense that they are only on his back.”

So…comes down to this. If blisters are from the Septic Shock they will treat by upping the immune system to fight the bacteria……if the blisters are from GVHD, they need to suppress the immune system to suppress the attack on the skin organ. Totally opposite treatments. If they are wrong, the treatment makes the other diagnosis/symptoms worse.

I will forever wonder.

“We will call in Infectious Disease team to get their opinion on the blisters.”, she says.

They would diagnose the blisters, my mom would diagnose my attire. She brought me new clothes the next day….Dark Denim Mom jeans, and a couple Reebok t-shirts…yep, they go on my body, I can button them and they are clean! Good to go. The rest of the week, I rotated these with patient scrubs and white t-shirts that had CHMC permanent markered across the chest.

I didn’t have Dave bring me clothing until the second week…..because Denial was a friend to me, and I thought Cory might actually be back on the Bone Marrow Transplant Unit and I might be back to work the next week…..she said ventilator out by the end of the week, right??? That’s when things go back to the way they were. On his way to full grafting, full immune system on the BMT unit, then home. We Will Be Back On Schedule by Next Week! Oh, yeah! …(Oh, no. But it got me through the day….Denial got me through many, many, many days.)

Charlie was the sensible one, and oh, so diplomatically said on day ….day something…. “So! I will go to the parent room and shower, then YOU can go to the parent room and shower, good plan?”  It wasn’t really a question, and I knew that.  Bless him for trying to bring order and routine and sense into our days there, when I felt none. I didn’t want to leave Cory’s side. I was afraid to go shower, afraid to leave him. But I did.  ”He’ll be okay, he’ll be okay…go on.”

In the shower, I sobbed and sobbed. I was in a ball in the tub. It was the first time, but certainly not the last. I told God….I cannot do this. I cannot. Do not ask this of me….or him.

My son in the ICU: And then the saints came marching in.

September,2013…

So, when the dust settled from the rolling, and saving, and pushing and inserting….and the 15 medical miracle workers dwindled down to 2….and they closed the big glass doors to his room, I praised God in the hallway literally and figuratively.

This is not Cory, but this is exactly how he looked. Profoundly, beautifully Asleep, Peaceful, and Alive.
I pulled up a chair next to his bedside and made myself comfortable. I held his hand and visually took him in, just like when he was a baby.
I wanted to crawl in next to him…like the many times I did on the Bone Marrow Transplant floor or the Oncology Unit…to watch a movie, to play yet another game of Quirkle, to hold him in those so,so few moments he cried, or for him to show me something—some song, some game, or teach me something I was technologically inept at, on his computer.
But he was too fragile… too covered with lines and tubes and tape. So I just sat and praised and thanked God that in THIS moment that He. Was. Alive.

Then the Saints came in. Cory’s PICU nurses for the shift. They showed up every day ready to advocate and care for the physical well being of their patient, and over the course of our 2 month pitstop in the ICU,we fell in love with them.
Then the Troops, Dave and Mom, came in that night. Their eyes big and scared and worried….I finally cried, sobbed really. Longest, hardest night of my life just happened…..or so I thought.
Then more troops— Charlie arrived as soon as he could….I proceeded to spend more time with my ex-husband in the next two weeks than we probably spent together in the 5 years we were married. And it was fine.
See… The ICU has a way of stripping away anything that doesnt really matter in the grand scheme of things. Only one thing mattered to anyone in that room. Loving Cory. Caring for Cory. Helping Cory.
Period. We were his family.

The Good News:
1.He was out of septic shock.
2.They saved him.

To Do List:
1. Get the results from testing to find out what the Monster Bacteria that did this to my son is.
2. Kill it.
3. Heal up those organs.
4. Get off the ventilator.
5. Get out of ICU back onto the Bone Marrow Transplant floor
6 Take Cory and his fully grafted, fully functional germ-fighting bone marrow HOME.

Please, Dear God, please.