My Son in the ICU: Living on the Edge

37766_445957641239_1438903_nMid October 2013:

“Hmmm…that almost looks like healing…that would be crazy.”–Dr. Wong

“Things are definitely getting better!”–Dr. Jodelle

“I am very optimistic.”-another doctor…..

These are the words we heard over the next two weeks as the Ambisome anti-fungal drug did its job in Cory’s war-torn body. We were elated. Back on the healing track again.

The blisters were scabbing over, Cory was out of severe pain again and you could see a new-found spark and energy in his eyes. One of determination and moving forward. He was still on the waiting list to be moved out of the ICU. In the meantime, we followed his schedule of occupational therapy, physical therapy, music therapy, natural healing therapy, photo-furisis therapy, and dialysis.

He had his blood tested every hour….(you could ask me anything–blood pressure map? pushing platelets? creatinine levels? culture all lumens? Neutrophil count? EKG, BUN, CMV, EBV, BKV, ANC, Chicken Noodle Soup. I’d had a crash course in bed-side nursing and I took my new job seriously, because this is what parents do, right? Chameleon into whatever our children need us to be, making it our expertise, and going to bat for them when they can’t.)

He couldn’t have a catheter because of the ongoing blood and clots forming in his bladder from the BK virus. So we had to empty his bladder by sedating him, catheterizing, then using a syringe to empty his bladder of blood and clots. We all had our roles. Nurse #1 would catheterize, Nurse #2 would hold the measuring container, and I would syringe and empty, syringe and empty, syringe and empty until there was no more.

Every. 4. Hours. Every day.

So much blood.

But his bladder, full of blood and quarter-sized clots were the least of their concerns. It was just part of the routine. So many hands required for his care, any parent in the room jumped in the trenches with the nurses.

He was still being fed TPN (Nutrition intravenously), still had a feeding tube for oral medications, but miraculously was beginning to eat again. 3 times a day, 3 bites of a vanilla milkshake. It’s the little things.

Our days were full.

“When can I get my arm fixed?” …referring to the broken cadaver bone in his left arm where his Ewings Sarcoma tumor once was.

“What can we do about this?”, he asked as he motioned his hand in a circle in front of his face…referring to his ravaged nose and patched black portions of skin on his face. Though he never once asked to look in a mirror in two months, he could feel it. His nose looked like a piece of charcoal, deadened by the fungus that attacked it. It was evident he would need a prosthetic at some point, but again, not the medical team’s number one priority.  It was magical to hear him discussing his future, though. To hear him be able to think beyond the pokes and prodding that consumed his waking hours. Hope. He had hope and so would we.

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They called in the Ear, Nose, and Throat team to assess. They ordered an MRI. It was explained that if the fungus had permeated the brain lining, there was no treatment. It would lead to irreversible brain damage and death if it had crossed the barrier.

We saw the pictures….the fungus had invaded his nasal cavity and had grown right up to the brain barrier, but had not yet crossed it. The Ambisome had stopped it in its tracks. Again commentary from this doctor that had “Never seen anything like this..someone’s looking out for him.” Another miracle of it stopping Right There—on the edge of disaster.

6 weeks now of living on the edge…

That night the resident ENT’s (3 of them in green scrubs) came rushing in to speak with Cory. It was late, we were settled in for the night. They woke him. It seemed urgent. I pulled my covers off my pull out chair-bed and went to the foot of his bed to listen. They repeated the results of the MRI, then went on to say that they would have to do surgery right away, to scrape away the old fungus from his nasal cavity so that it would never cross the brain barrier. He would have to go in the next morning and that time was of the essence! Cory said, of course, yes. They would bring the paperwork in the AM.green scrubsAdrenaline was pumping, I’m sure Cory’s was too. A New Mission. We had to have our minds focused and ready. His for the battle, mine for the support. I hardly slept. I Googled instead. Everything I read backed up what the Residents had said. Survivors of fungal infections had this procedure done as soon as it was realized so close to the brain. Ok.

At 6:30 AM, I was already up for rounds. Cory was awake and looked ready to go into the ring. Alert, awake, glasses on.

I stepped into the hallway and listened to each medical team’s assessments. There was no ENT in sight, though. I perused the faces of the 10 + doctors that surrounded Cory’s door. The Ear, Nose, and Throat doctors were not there. After a “status quo” report from each team (urology, cardiac, bone marrow transplant, kidney, etc.), they asked the standard “Do you have any questions?”

Ummmm. I shared the visit and details from the ENT residents the night before… we were told he needed surgery??? The look of confusion from every doctor in the room was evident. I felt the urge to convince them I hadn’t dreamt or imagined it…there really were 3 doctors who visited us the evening before. Wires were obviously crossed, but these seemed like pretty important wires to have in the correct place. They would send ENT to talk with us, because no one in this room knew anything about it.

I went and informed Cory to relax. Someone was coming to explain. His look of anticipation transformed to resignation. He slipped off his glasses to sleep. We waited two days and worried about the fungus and the brain barrier and the neglect of the apparent procedure that needed to happen “immediately” ….and finally he came. The head honcho of Ear, Nose, and Throat Land. He was surprisingly down to earth for “the man in charge”. I was suspicious as to why he was here alone and the resident doctors were Star-Treked out of our existence.

“Hi Cory.” He went on to explain that yes, the fungus had not infiltrated the brain, and the Ambisome was doing its job, so we were going to wait and see.

I knew what he meant by wait and see. Wait and See if Cory survived. I wondered if Cory knew too. Even though he couldn’t walk or sit up on his own, he wanted to do something to Move Forward. Get in there and start repairing things. Cory’s will astounded me.

“When we do the surgery, we will bring in pictures of faces for you to choose from. You will lose your sense of smell and some taste. Could effect your hearing and a chance of losing your eyes….and, you know, if that is the case…well, that’s no quality of life.”,said Head Honcho.

Faces? Not just a prosthetic nose, but a face?! I was dumbfounded. Star Trek, indeed…

Cory, though, wasn’t shocked or intimidated by the thought of a new face and no senses. He would take it. He wasn’t focused on vanity or quality of life…he just wanted Life.

He just nodded with that little half smirk of disappointment that they wouldn’t be doing something Now and said, “Okay, thank you.” and shook the doctor’s hand.

More Wait and See…

My son in the ICU: The Brink of Life

It was almost October, 2013

Cory had made a turn from the brink of Death to the brink of Life.

Just so happened to coincide with his transfer from a typical hospital room to a spacious, light-filled, sunny hospital room (still so grateful.). Which was a perfect place, as far as hospital rooms go, for Cory to be, because he was an outdoorsy guy through and through. Venture to say he spent an entire 1/3 of his life outdoors….camping, climbing, cliffing, biking, caving, on trails, off trails….he had no need for material things, just a need for Nature. So it was no surprise that we saw him open up and blossom a little when he could once again see outside and soak up some Sun.

This is what he looked like from the Outside:

His body and face and bald head were covered with purple lesions and sores (but they were just beginning to dry up and show signs of healing)….and we put his glasses on him during the day, no matter what. . Because if he was alert (he was alert and awake longer and longer every day), even if momentarily…at least he could see. The glasses barely balanced on his nose, that he was sure to lose, due to the fungal blister that draped over the whole of it. And he had a feeding tube fed down one of the nostrils, that was only used for medications that had to be absorbed orally. His stomach couldn’t handle food or drink yet.

He now had a PICC Line in his neck, the vein of his existence…literally.  It had been moved from his arm to his groin to his neck because of infection (Forever fighting bacteria that would take up residence in the plastic of the lines)…yep, just stuck right there in his neck. 3 lines that went into one place (that artery headed directly into the heart)….and branched off what looked like 20 lines that fed into the 3. Watching the nurses “change the lines” looked like the wiring of a computer, with electrical lines long enough for them to get tangled in the web of at any moment. And they all fed into this one hole in Cory’s neck.

His PICC line fed him nutrition (because he couldn’t eat or drink), hydration, blood, platelets, numerous antibiotics or anti-virals or whatever the medication of the day was. And all of these things were in bags hanging on his pole, but couldn’t be all at once….so those blessed nurses had to have a “line up” of what to hang, send in, order, take down, and when. See, they could be football coaches, too! —  “Send in the red-blood cells, take out the anti-viral, send in 2 antibiotics and in the Second Half, we’ll send in nutrition….skip the digestive system, go for the tackle and time the Platelets!”— (…and I’m hearing that college football announcer voice right now….) These nurses were totally winning this game in my eyes.

Seriously, In Awe, all. the. time. Nursing isn’t for sissies.

Anyway, he also had an IV in his wrist where his pain medication was administered as well, or whatever additional medication they determined he needed.

He had stickers all over his chest that attached to wires to monitors for his heart and breathing rate, and a pulse ox (like a band-aide) attached to another line that monitored his oxygen. And we could watch it all on the monitor from where we sat….just like on TV.

And he was adorned with different machinery daily….EKG machines or Dialysis machines or photosynthesis machines or respiratory assistance machinery if needed, or x-ray machines when his line would go awry near his heart, or even a portable cat-scan machine when he was thought to have had a seizure.mri

He wore a hospital gown like a sheet that often ended up around his waist, because it was too difficult to fasten or dress him with all the tubes and lines attached.

cory zebraAnd he wore his sisters zebra striped heating blanket over top that she loaned him. So him.

He hadn’t been out of bed in a month, he couldn’t sit or stand.

We sponge bathed him in bed, we gauzed his teeth and gums (because the sores in his mouth never left and couldn’t handle a brush), we held cups to his mouth for sips of water through a straw that we held in place for him as he gradually was able to handle drinking, we applied a honey treatment to his 100+ sores that covered his body, we pushed the buttons to move his bed and head and feet up or down to his liking, we hand-syringed his stomach through his feeding tube to empty it of whatever might be building up in it if he was nauseous. He was 25 years old and could do nothing for himself at this point, and we were his pinch hitters.

And he was BEAUTIFUL.

He was responding with conversation and slight smiles and better “numbers” and signs of healing instead of signs of death. He was still Alive when he shouldn’t have been.

And this is what he looked like from the Inside:

In one of the first few days in the Light-filled hospital room, Cory said in his raspy voice,

“Don’t give up on Me.”

“No way”, I said.

And we didn’t.

From an outsiders point of view, the brink of death and the brink of life might not look all that different, but we could see the Resolve in Cory’s oh-so-tired eyes…THIS was the real Brink of Life. It was in him.

This time, I didn’t have to sign anything on his behalf— He signed off on his Will to Live all on his own.