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.


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 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: Doctors…They are only human.

Early October, 2013

He continued to thrive, relatively…always relatively.

They just kept treating him as they’d been treating him. The anti-fungal that I fed into his feeding tube into his stomach each day was apparently doing the job. He needed less everything as each day passed. Less pain meds, less blood, less platelets, less dialysis, less tests, less vitals taken, less care. It seemed about a week or so passed of doctors ….waiting….waiting….for things to take a turn for the worse.

That didn’t happen. He had More energy, more self-care, more conversation, more movement, more good “numbers”, more stability, more predictability, more healing, more Intention every day. He was waiting for a room to open up on the Bone Marrow Transplant Unit. He required ALOT of care, but no longer needed Intensive Care.

Cory and I or Cory and his visitors had meaningful or meaningless (which was just as valuable) every day. We told him about the Do Not Resuscitate Order. I apologetically told him why they recommended it and I signed it. He told me it was okay….that under the circumstances, we all did what he would of wanted. Then he said, “That’s why I had You sign that paper.” [the medical power-of-attorney….at which time I signed, I never dreamt I would be called on to use].  He consulted the doctors and all felt it would be prudent to revise it under the strange circumstances that he was improving. (It was an absolute Relief to be able to have his say in his medical decisions again. A Relief.) They took the DNR order off.

A Doctor said: “This has never been reversed. I will be honest and say that we don’t understand it. We are meeting every morning (like, 8 doctors…and if you include the residents, well, it’s ALOT of doctors) to decide where we go from here.” I could feel the doctors being more “careful” with what they said to us. There was some dissention in the ranks and they became cautious not to pass that on to us, which we appreciated, but could still sense. Until…

He got a new round of Fungal blisters early October. The month-old ones from the first round were drying up, healing. These new ones came in with the same vengeance and pain that the first round did, only this time we knew immediately what they were. The doctor teams rotated in that day, one by one at different times in the day. They upped the Anti-fungal, they upped the pain meds. Once again, he couldn’t be touched or moved without off the charts pain.

Cory said to me when I asked him if he wanted another ‘push-of-the-button’ pain medication hooked up to his IV, “I want to be Awake.”

I said, “You need to be comfortable, not in pain. There is no need for you to suffer.” He said again, “I want to be Awake.” He did not want to go again into the abyss of pain medication.

“Then we will take the pain meds slow. Can I give another push…you are hurting.” I said. The moans and the groans and the crying out when we or the nurses had to touch him to care for him. There is NOTHING like seeing your child in this level of pain. Nothing.

But, this was not about Me. And as long as he was capable of giving intelligible instruction on his care, we would all respect it.  He was my son, but had grown into a man through his cancer journey. If possible, things would be up to him.

“Yes, push the button.” , he finally said. Through the day we figured out when to give him extra pain meds if certain procedures were occurring, and to back off when he was at rest. So he could be Awake when he wanted to be, and somewhat comfortable when he had to be touched.

In came Kidney, and ENT, and Cardiology teams… by one coming in to lift the sheets and look at the new blisters and say, “mmmm, mmmm, mmmm. ” and purse their lips, and then look up at us with the hopeless look in their eyes we’d seen the first time around.

Then, in came Team Infectious Disease. New Face on Rotation that was on last time around, and this is what he had to say: “We can save his life.” He said the magic words. He was like….20? (not really, but that’s how anyone under 35 looks to me these days). “How?”, I say. “He needs Ambisome…..” then rattled off some statistics that I didn’t even hear because I was having a flashback to the Oncology unit when Cory had an Anaphylactic reaction to Ambisome and blew up like a balloon and his lips turned purple and he couldn’t breathe and they slapped a Big Red bracelet on his arm that he still wore that said AMBISOME on it. Aaaaaaand, I was like….see the bracelet? without saying it, just pointing, like duh, don’t- these-bracelets-mean-anything-to-you? He CLEARLY can’t have Ambisome….it could kill him. Yeah, and? “The fungus will kill him.”, he said.

Here we are again. My head is literally spinning. I can’t even manage to put a simple postage stamp on the 25 addressed Thank-you cards (in my junk drawer at home that I wrote 2 years ago) and place them in my mailbox…..and this doctor wants me to understand his point from the 10 words he’s just given me??? I simply said, “I don’t understand.”….which it turns out was exactly what he was waiting for me to say, because then he started to explain….

There was an Allergy team of doctors….another team….that could do this thing called “Exposure Therapy”.  From my understanding, little by very little, they introduce the allergen to the body under supervision, giving the body time to develop immunity and accept it instead of rejecting it. He said we should do this, because the digestive anti-fungal we’d been giving him has been halted by many digestive issues blocking absorbtion. Ambisome would not experience this problem in the bloodstream. And the exposure therapy would make it that he could receive it. OK, great!!!…

But then….In came team Bone Marrow Transplant team (these were the Cheerleaders, the positive, glass 3/4 full docs…..I imagine, because BMTransplants are a relatively new  lifesaving discovery (like 30 years)….it’s all hopeful. Just surviving is hopeful.) They’d been with us from the start, we trusted, and they felt like family. Buuuut…..they were not my go-to cheerleaders in this circumstance. They didn’t buy the Infectious Disease Team’s strategy. “He might not survive the Exposure Therapy. I don’t feel comfortable signing off on that. It’s UP TO YOU.”

(Wait, can we have a debate? With both teams in at the same time? I will provide podiums….please??!!!)

I wanted to say, “WHAAAATTTT??? Up to us? How is this medical decision up to us?? You are the doctors! TELL me, collectively, what is best for my son, and I will believe you becauseyouareDOCTORS!!!!!”, but I didn’t say anything. All the panic was safely in the confines of my head.


With concern in her voice,  she said,  “Call me when you’ve decided.”  I can still remember the moment of realization that Doctors were human. Praise God for them, praise be…they are the only reason my son was with us, but they are Human. My heart went out to their struggle. I stared at the phone for a couple minutes, shut my eyes and said a little prayer. I breathed and breathed when I wanted to scream and scream, but I was in the room with Cory, so I didn’t.

“Not happening” was what my brain said, but it was. I googled and googled and thought, “There is 1000 years of education in this hospital and I am googling a Cliff-notes version to help DECIDE what path of medical treatment to head down for my son???”…..HUH? At that moment, I felt that my life, as I knew it, was a scam.

I was still the Power of Attorney because of the amount of pain medication Cory was on. I was still the final say. But I knew when Cory was Him, so we made a commitment to make his opinion all we would ever vote for, even if we felt differently (which thankfully never happened). We made a commitment to being His advocate. HE was in charge of HIM and I wanted him to know that.

We had to get Cory’s opinion. I waited until it seemed the meds had mostly worn off and he was somewhat clearminded. I explained at 1 in the morning everything all sets of doctors had said. I said, “What do you think?” He was quiet for what seemed like 10 minutes, but I’m sure was only 2 min. He said, “Let’s Do It.” “Do what?” I said, just to clarify. “The allergy thing.”, he said. He was willing to risk his life to save it.  I agreed. His other parents agreed. To be honest….it was worth a try. The outcome, if it failed, was the same outcome if we never tried.

This life thing…it’s a team effort. No one does it alone.

My Son in the ICU: The Glass IS Half Full

wpid-img_20130919_204052_857.jpgSee the relaxed look in everyone’s eyes? It’s the look of relief and expectancy. Not unlike the feeling of expectancy when small signs of Spring appear after the winter. Seeing with our own eyes the trees budding brings the promise of leaves and fruit, seeing little stems break the earth knowing a tulip will soon follow, or that first day you can take off your coat outside after a frigid winter, because it’s finally warm and sunny…THAT feeling. Because you are at Peace that Spring has finally arrived after all that snow and ice and slippery roads.

wpid-img_20130919_203915_491.jpg In this picture, we are showing Cory all the Love Cory Day posts and pictures that everyone sent in….because we can.

wpid-img_20130919_203903_133.jpgWe are surrounding him with love and all shades of Happy because he is communicating and pointing and Here.  Simply basking in his Aliveness and Responsiveness.

cory family

It’s this day that this All Smiles picture was taken. We are smiling because it’s Spring, smack dab at the beginning of October!! We’ve taken our winter coats off and can’t wait for things to bloom.

The Vigil retreated. And rightly so. Cory was evidently going to be around a bit.

It was confusing to family and the medical staff alike as to what to do next… Leave? Wait? Treat? Wait and see what happens?…….What now??

Family-wise everyone, over about a week’s time (by early October)….went home. To work, school, families, and ordinary life. They still visited, but visited like they were visiting someone in the hospital who was getting Well……not moving in because someone was dying.

And Cory and I created a semblance of an “ordinary life” in a hospital room 5 floors up in Cincinnati Children’s Hospital. He was still bed-bound, but bound and determined to get better, get up and get going. He made progress everyday.

Medical-wise, things weren’t as clear. There was dissention. Cory literally had about 8 doctors, and each doctor had another doctor working with him/her. One Team for each body part. The Kidney team, Bone-Marrow transplant team, Intensive Care Team, Infectious Disease team, Ear, Nose and Throat team, Pain-Management team, Urology team, the Nursing team, etc.

[I want to precede the following details by saying that we have NO complaints about the medical staff. None. These were human beings trying to save our child with everything they knew and didn’t know. I am just reflecting some of our feelings at the time, which were obviously filled with emotion. I am sharing these details and feelings with the mission of being Real. But EVERYONE, regardless of disagreements at times, were acting in what they felt was in Cory’s Best Interest. I have NO doubt in my mind or heart about that. Only Grateful, only grateful, that every single medical professional cared SO much ❤ ]

They attempted to keep a United Front, but it was evident there wasn’t.

One of the Doctor Teams was reported by a nurse to Someone, Somewhere, and was under Some investigation-of-sorts for Something in regards to Cory’s case. That’s all I knew and wanted to know…..I still don’t. We trusted them to work it out, and said so….And apparently they did.

In another situation, we got the impression that One Doctor Team often believed, it seemed, that another Doctor Team was too “polly-anna” with us, using words like “very optimistic”and  “miracle” and consistently focusing on improvements. This May Be, but we really did hear Everything….the hopeful, the hopeless, the good, bad and ugly. We did not have our heads in the sand. We took in the facts and chose to look at the cup half-full (that was Cory’s way…), and that’s all that’s to it. Encouraging us and Cory wasn’t always viewed as a good thing by All the doctors, but we really did appreciate the doctors who did.  We also appreciated the doctors who didn’t. It gave us a very Real sense of the situation.

Regardless, though, we would still be hope-full and fill that room with love and not “give-up” on Cory, regardless! Because that is exactly what Cory verbally told us he wanted.

And as parents, one wouldn’t naturally do anything else. You cheer your kid on in spite of the odds, right? At their soccer game or their hospital bed-side. That’s our job. When your kid is fighting for a goal, a touchdown, a degree, or his life, he needs to hear his parents cheering him on….Plus, it was a win, win.  If he were to live, he would recover with positivity and love. If he were to die, he would die surrounded by positivity and love…. Would anything else make sense for a family To Do in these circumstances??? My experienced mind and heart says, “No”. I’d approach it that way all over again and would hope my family would do the same for me.

Yet, Another Two Doctors (of like 16) wanted us to blatantly tell Cory he was dying, now that he was more responsive, so that he wouldn’t “misunderstand” his improvements. (But…..No One understood his improvements.) These very select doctors spoke about it to us Daily, which felt like Pressure and we resented. (We ultimately felt that this had more to do between them and the other Doctor Team’s different opinions than it had to do with Us, but we were the ones hearing about it.)

We knew Cory. They did not. We expressed this very sensitive information of what he had been through, how life threatening things were, and what some doctors saw his chances to be, to Cory in Cory’s way and in Cory’s time. We slowly told him Everything, as he was slowly gaining his mental and emotional footing….which, frankly, Cory didn’t want to discuss further….so, he acknowledged it, then went on. This was his way throughout his entire Cancer fight. Good or bad, it’s how he wanted to deal with it. He didn’t want to talk about it, give energy to it, or worry. His response was precisely what it had been all along….OK, now let’s keep truckin’.

Because of this, a Particular Doctor (who we had never met before and didn’t know Cory personally or professionally AT ALL) was still not convinced Cory understood the gravity of his situation and this Dr. continued to address it with Charlie and I regularly. It was a priority of our family to treat the medical staff with the Utmost of Respect and Courtesy at all times….. until we could not take his harping any longer. Charlie told him in no uncertain terms that  Cory had indeed been informed, but we were not going to remind him Every Day of this this particular doctor’s prognosis that things were Hopeless. And we didn’t need to be reminded Every Day either that he thinks things are Grave. We Knew. And so did Cory. But, we followed Cory’s lead in focusing on the Living Moment at hand, and Hoping. The End.

We were glad when this Dr.’s rotation was over….

Now that Cory had a say in things again, this was his rodeo and we advocated for all to respect how he wanted to ride. He wanted to Live and that’s what he focused on, so, so did We.

Living: Holding a cup and putting a straw to his mouth by himself. Drinking a milkshake. Swabbing his own gums and teeth. Picking his leg up and down 4 inches with the Physical therapist. Pushing his own buttons to move his bed up and down. Typing a single message on Facebook. Listening to a Tom Clancy book-on-tape. Having a daily routine even though 3/4 of it was still sleeping.

He was too busy trying to Live to worry about dying.

Our Neighbor in the ICU, Jonathon

Cory was doing better (relatively, of course). “Well” meant, first and foremost, he was Alive…..weeks after they said he wouldn’t be. He was showing signs of healing. He was cognitive and clear-minded. We had just written a “schedule” of our daily routine on a white-board, made up of waking up, sponge baths, prayer/meditation, reading, physical therapy assignments, occupational therapy assignments, times of ENT doctors coming in, times of BMT doctors coming in, times of Infectious Disease doctors coming in, times of rounds and visitors, times of  meds.

I met Amy in the “parent-room” of Floor 5, Pediatric ICU at Cincinnati Children’s Hospital. A place where there was constant coffee, on Tuesday’s pizza provided by LaRosa’s, and lots of Tears on cell-phones. It didn’t even phase you to see a parent on a couch in the Parent Room Sobbing and sharing on their cell phones the all familiar words of blood counts & breath counts & open eyes & words said & inputs & outputs….. Sometimes, we talked to one another, sometimes we didn’t. Usually, you just walked by to fill your coffee like you were walking in the mall seeing anyone on their phone, because it was just the way it is in the ICU. But everyone had the same Despondent look in their eyes….it’s like nothing else, and we (Cory’s Parents) would talk of it often. Passing parents in the hallway…everyone had the same Look. A look of sadness, desperation, hopelessness and hopefulness all mixed up.

Anyway, Amy was actually more upbeat than others (she’d just arrived, that’s why)…her son was 24 (a year younger than Cory), had a bone-marrow transplant 11 days before (Cory was going on 74 days), and had lung issues, so was sent to ICU because needed to be on a ventilator. They were from Kentucky, and her husband and she shared their pans of Lasagna and Tuna Casserole with me. They had the cutest Kentucky accents with a smile with every word they said. They uplifted me just while they talked.

We passed each other daily for about a week, in the hallway, the cafeteria, the elevator, or the Parent Room. “How’s he doing?”….and we would get all the STATS(which we both completely understood because we had a crash course in nursing against-our-will).

Then one day, an ordinary PICU day,

Cory had just fallen asleep. I got up to go get more warm blankets, to refill my cup with ice, simple things, opened the sliding doors to Cory’s room and sensed EMERGENCY.  Nurses from who-knows-where and doctors and lots and lots of people were flooding the room next door…(in the same room they all came flooding in when I’d arrived with Cory  in the ICU.)

Bur this was Amy’s baby. Everyone running, machines rolling in….I knew to shut our sliding glass door and stay in. It’s slow-motion from this moment on…..

I turned to the right, and through the small rectangle  window that  connected  our rooms, or maybe it was just outside our room? I can’t remember exactly, but doesn’t matter….

My eyes wide open and shocked seeing the mass of people in that room and the doctor take the paddles and place them on his chest and the words I couldn’t hear. His body jerked and arched, then relaxed, then jerked and then relaxed, and again jerked and relaxed. I turned away, sat on the floor and cried.paddles

How is my child still alive after 82 days and hers is dying after 18? How? Why? Whaaaat? I  prayed the Our Father 3 times. I prayed, “Let their baby live” 12 times. I panic-prayed.

It breaks my heart still. I would give those days to any parent, sibling, or person in an instant if I could. Really would give my whole life for that.

And seeing the paddle stuff in real life on a real human being, on a real Amy’s child….is NOT like seeing it on TV.

I stood back up. Thank Be  that someone shut those blinds. I went and stared at Cory with my heart racing and tears flowing for at least an hour. I was afraid to step back out of the room.

He died. Take that in….Jonathon died. He lived 24  years. Twenty-Four. I was barely getting started at 24. Thanks, Cancer.

I knew he died, because the next morning the room was empty, the bed was made to crisp, and there was no Amy or Jonathon to be found. I missed her, I wanted to hug her, and she was just…gone…and I only knew her first name–Mom.

The “survivors guilt” was overwhelming. And still, in a way, is. I had over a month more with my son….30 more days of conversation, and touch, and physical therapy, and prayer, and hugs and kisses….that she didn’t.

I had told Cory about his neighbor when they were admitted. To give him a sense of Solidarity or that he wasn’t the only 20-something year old in the pediatric ICU of a children’s hospital that had cancer, then a bone marrow transplant, then complications that sent them to the PICU.

I didn’t tell him about his neighbors outcome, and I prayed he wouldn’t ask. He never did.

My son in the ICU, If I had a boat….

End of September 2013:

We were waiting, counting days and moments and temperatures that Cory couldn’t shake.

Cory’s dad, Charlie, was the expert temperature taker and our moods would rise and fall according to .5 movement up or down the thermometer reading. If there was movement either way, we would take it again and again within the same hour.

We were told he had days or maybe a week. We were looking for signs of a miracle or signs of death. No gray in those days….black and white, hope or despair, up and down the rollercoaster operated by a fungus.

I was either praying and bargaining with God or googling “signs of death”. Like we might miss it.

Desperately wanting control when we had none.

I googled many sites over and over…looking for a site where he didn’t meet every “sign”. For  a tangible ray of hope. Couldn’t find one. Check, check, check, check—-all physical signs were there.

But I didn’t (or couldn’t) believe it. I yelled at myself in my head and said words like “reject!” or “no!” to any sign of acceptance or negativity in my thoughts. I was Believing God for a Miracle to save my son. I wanted to talk with him again, hang out with him… this all happened so fast. I wasn’t ready and didn’t believe he was either. End. Of. Story.

Then one night, he sat up in his bed (yes, Sat Up). I asked him what he was doing as he picked at his sheets at first and then was clearly reaching over one side of his legs and looking like he was grabbing things and moving them to the other side of his body.

“I’m packing”, he said. “I have to go.”

Thinking he was talking in his sleep, we tried to lay him back down, but he was insistent. So we let him pack. I watched with tears rolling down my face with my first real thoughts of, “He’s leaving us.”

The next day, family came to visit. He started telling everyone where he was….”I’m at the ocean.” and he was so content and happy. To which someone asked, “Who is there?”….”Well, there’s that Lion over there, lookin’ all regal!”– “Where?”– “Over there on the beach.”…And when Jimmy walked in, Cory looked straight at him and said excitedly, “Hey! How’d you get here? By boat??”  He apparently had arrived.cory boat

Well, then.

I googled again….a phenomena known as “nearing death awareness” seemed to fit the bill psychologically. Spiritually speaking, a common occurrence of “One foot in, one foot out” where they are somewhere else, but able to communicate it with us here. Often involving relatives that have passed or descriptions of heaven.


“If I had a boat
I’d go out on the ocean
And if I had a pony
I’d ride him on my boat
And we could all together
Go out on the ocean
Me upon my pony on my boat”…Lyle Lovett

My son in the ICU, TODAY: Shower, eat, sign DNR orders, pay bills, call kids.

last week of September, 2013….cory lines

Cory’s Dad, Charlie flew back after being home in Arizona a matter of hours…

We asked for a meeting with the Attending (head doctor) of the ICU. We asked for privacy. Dave (Cory’s stepdad) and Charlie (Cory’s Dad) and I went into an empty patient room with this man. A man who was bald with a goatee and obviously very intelligent and compassionate and we trusted. So much goes on gut….we trusted this guy. And we all, all three of us cried.

We got the word that Cory was dying with no chance of recovery from the fungus that had taken up residence in his body (zero survivors).

We decided I’d (ME??? How’d I get this job….oh, yeah, Cory handed me the papers months ago saying, “They said someone has to sign this.” He had it all filled out with my name on the sign the DNR)…. with parameters, is what we ultimately decided….if it was a blood pressure issue, they would treat. If it was a kidney issue, they would treat. If it was his heart or breathing, they would not.

Why the parameters? Because on the off chance that he might miraculously recover because of the anti-fungal treatment they were giving him, we wanted to give him a fighting chance.

There are firsts. There are miracles. And they said the anti-fungal treatment would not keep him alive, but if it did, we wanted him resuscitated under circumstances that would NOT cause him undue further pain or suffering.

**If his heart stopped, compressions or paddles would cause him grave pain, so they would Not resuscitate if this happened.

**If his breathing stopped, intubation would cause him grave pain, so they would Not resuscitate if this happened.

**If his kidneys shut down, dialysis would  not cause him pain to receive, so they Would resuscitate in this manner.

**If his blood pressure dropped, they could bring it up by administering medication….simple, so they Would also resuscitate if this was the case.

<<< CAN YOU IMAGINE?? ….I am sitting right here, and I can’t imagine that we had to make these decisions about when to save our child’s life and when Not to. WHAT???

This part was not in the What to Expect When You are Expecting book.>>>

We just wanted to give the meds a chance to work if they could……then…..

His pain was off the charts! His suffering was intense. The blisters were all over his head, his face, his nose was covered with a huge wound. And he was in unmanageable pain….and if these lesions were on the inside as well as the outside, no wonder. He was in pain,  just lying still. And it was amplified if we or the nursing staff had to touch him and care for him for Any. Reason.

And there were lots of reasons we and they had No Choice but to touch him. To give him basic human care. And it brought us to tears and agony with his agony

….and it was getting worse, much worse, and he was getting louder, much louder.

Then, we wondered to one another…..Are We Doing This To Him??????? while trying to help him ????

Are we Doing this to him by allowing the Anti-Fungal Treatment? Are we prolonging the inevitable? Are we only prolonging his suffering and not really prolonging his life????

So, we requested a meeting with the Attending of the ICU. He came into Cory’s room hours later, and we asked if we could go somewhere private. I’ve heard about those patients in a hospital room you think can’t hear, but really can….and we weren’t going to allow Cory to hear- even subconsciously- Our worry, Our pain. He had enough on his plate.

So we followed the bald man with the goatee. Through the pod of rooms out to another pod. Step, step, step in unison, in a line behind him in silence. He slid his pass into another pod, the automatic doors opened into an identical pod. Step, step, step, step. I can still hear the stepping. I have a lot of really clear auditory memories….

He peeked into rooms until he found an empty one. Opened the glass doors and we all went in. We unstacked a couple chairs….there was a baby bed in the room. I couldn’t help thinking, “A baby laid in there. I hope he made it.”

“Take a seat”, Dr. said.

The Doctor in his predictable white coat sat near the entry glass doors and we assembled three chairs facing him.

Charlie started. “Are we doing the right thing?” and he was sucking up his tears. (Cory came by his rarely-crying honestly) But Charlie couldn’t help it….none of us could. We were all just sucking up, wiping tears, sucking up, wiping tears, so we could attempt to have a professional conversation.

Dr. said, “Yes, I can tell you are the type of parents who have your child’s interests at heart, not your own. You are doing the right thing. You are doing a great job.”

We weren’t here for a pep talk. Confusion set in. I thought, “He doesn’t understand what we are asking.”

I said, “He is in SO MUCH pain. The meds don’t seem to be touching it.”

Dr. shook his head in agreement. He wasn’t getting it.

Charlie said something like, “We don’t want him to hurt anymore.”

Dr. — “Yes, it’s a very painful condition”

Dave says, “What do you think?”

Dr. says, “You are doing the right thing. “

OK. He doesn’t get what we are asking….and it’s difficult to ask directly, but we are getting nowhere with the pats-on-the-back…He is not in Cory’s room with us….he doesn’t know what we are asking.

Charlie says, “He’s in ALOT of pain. Should we be treating him????”

Dr. says, “Yes.”

What? Just, “Yes”?

OK. We are all three choked up, trying to get words out, trying to ask what we want to ask….aaaaand, it’s not working.

I take a deep breath, I wipe my tears, I take another deep breath and ask, “What if it was your child? Your child in this unbearable, immense pain….would you continue to administer the anti-fungal to treat what you tell us is untreatable? And what would your stance on the DNR be?”

Dr. says, “Yes, I would definitely continue to administer anti-fungal so pain doesn’t get worse. (It can get worse, I thought???) As far as the DNR, when the kidney’s go, I’d say no to dialysis.”

“What about the blood pressure?” I say.

“Oh, that could be many reasons, so bringing that back up is reasonable. We will see what happens.”

Then he went on to tell us on that we were exceptional parents and they ran into so many parents that wanted to go to crazy extremes to keep their child alive for selfish reasons and we were notthose parents and it was refreshing to see….OK. Yay, us…..exhaustion is all we felt. Emotional exhaustion. I guess we got our answer???

Carry on….

My son in the ICU: “I’m very sorry”, they say.

Tuesday, September 17, 2013

It’s 2:50-something. I’ve been waiting for 3:00.

“Mrs. Powell, hello.”

He has a beard laced with gray. He walks toward the end of Cory’s bed with his hands clasped behind him. He has a heart. I can see it.

I am in my usual position, next to the bed, with my hand slid under Cory’s hand (but not grasping so I won’t hurt him).

“So, I am the new Attending coming onto the Bone Marrow Transplant Unit.”

I’d figured it out by now that they rotate every 2,3,4 weeks? Time….so crazy how I developed a such a lack of Sense of Time in the ICU. But, anyway, they rotate.

I have a panic moment. I am attached to and trust my Lithuanian friend….the mother of a young adult son, like me, to be Cory’s primary doctor. But this peaceful, (of seemingly Arabic decent?) put me at ease. He has a beautiful accent and a soft voice and a gentle way about him as he lifted the sheets on Cory to inspect the odd never-seen-before-at Cincinnati-Children’s-hospital-Mold-induced-bruising-and blistering on my boy.

“Hmmmm. So, we will meet in the room. Right out the doors….in ten minutes okay with you?”, as if he is really asking me permission.

“Yes.”, I well up with fear tears.

He purses his lips in a sort of smilish way and nods a couple times and backs out of the room. I feel his respect as he left….respect of Cory, of me, of the situation??? I don’t know, but he is All Gentle and All Respectful. I like him. That’s good.

I talk to Cory quietly. He might wake up…he does sometimes (well, he wakes up BECAUSE of his intense pain…). Today he is on so many pain meds, and I can tell that he is in Deep. “Feeling no pain” isn’t some laughable joke about someone who’d had too much tequila….right now, it is just a gift.

“Cory. I don’t know if you hear me right now. I love you. And I’m going in to talk to the doctors. They are going to help you. They have figured out what is wrong and they are going to help you. So hang in there, buddy. I will be right back. I love you, your Dad loves you, Dave loves you, Debbie loves you.” I say that every time I leave him alone. All his parents love him.

I slide open the glass the doors, I walk 10 steps to the doors, I slide my ID so they would open, I walk left 5 steps and turn left into the first immediate door.

I can see in the window of the door that there are 8-10 people sitting in the 10 x 8 room. Waiting for Me. That little social anxiety feeling is creeping up my body from my toes to my face. It hangs out right about my chin…..

“Breathe,breathe,breathe… pleaseGod,pleaseGod,pleaseGod”. I don’t even know what I am asking for. But ThanksBe, He did. —–My mantra daily. But especially now.

I have never in my life felt more alone in a room FULL of people. I completely understand what that saying means right. at. this. moment.

I sit in the only empty chair in the room….in the middle of the circle of chairs, and even though I am IN the circle, I feel Center Stage.

Chris is one of Cory’s doctor’s that we met the day of his Leukemia diagnosis. Cory loves him. Really, really trusts him. And so do I. He is the father of two little ones, and works so much—alot—helping my son and many other patients while his little ones are at home with Mom? or daycare? I don’t know, but he LOVES them and is so proud of them, showing pictures to us regularly, and he is so affable and real and is physically and emotionally soft while being completely professional.

His. Heart. Is. In. This. He is at least 10-15 years younger than me, but he knows that Cory is my little one, and talks to me with the same sensitivity he would the Mom of a 2 year old. He begins to speak.

“So…” he says. And with that one word, his one look, I realize ….they don’t have me here to tell me how they are going to save my son from this now diagnosed mystery disease….they are here to tell me an AWFUL THING.

The tears just flow in that flowing-without-facial-malformation flow…the “beyond the ugly cry “cry. I never knew there was such a cry before the ICU. Your face doesn’t even have to lift a muscle.

“This is very rare. We could only find a handful of cases.” Rare again. This is what I came to understand:

We all have fungi and bacteria and virus’ hanging out in or on our body all.the.time.

Our Super-Heroes (Immune System) easily keeps these low-level bad guys isolated and locked up, never to bother our body again. I’d learned about this before, with the BK virus that came to life in Cory’s bladder….but a bacteria and virus were usually treatable, overcome-able. Fungus was a scarier story.

In Cory’s case, his New Immune System from his Bone Marrow Transplant started attacking his own body (Graft vs. Host Disease—kind of like an organ rejection). This can often be managed by temporarily suppressing the immune system until it feels more at home. This suppression also takes away the already taxed Super Hero Capes, though, and while they were sleeping…

The Fungus broke free and made its way into the bloodstream straight to Central Command–his heart–and like a Pin-Ball Machine, the heart-valves shot the fungus in 40 different directions throughout his body. They made themselves at home in his skin tissue, surfacing in the bruising and blistering and intense pain we witnessed.

There’s been a Fungi Party going on for days now with no treatment since no one had any idea what it was!  Four Days of it circulating through his bloodstream, around and around, creating more and more painful chaos. “Ping-ping-ping”… I can hear the heart-valves racking up the points for the opponent.

“OK,”  I say, “What now?” , though I know the answer.

“No one has ever survived this. I’m very sorry”

(I can’t tell you who is answering my questions. Different doctors are piping in, but all I see are slow motion talking heads.)

The actual words said out loud cause me to shake. I see tears from many others in the room.

How in the world do they do this all the time??

“So, there’s nothing we can do?”

“We will treat him with an anti-fungal so that the fungus doesn’t cause more pain, and we will continue to keep him comfortable, but what is done is done. Everything you see on the outside is all over every surface inside as well—his organs, any membrane surface. We’ve looked up every case and there are no survivors.”

“How long?”….Oh, my dear Jesus, How am I still speaking? (I had this funny sense often of being amazed that I was functioning at times.)

“Could be 2 days or 2 weeks, but not long.”

“Well, there could be a first, right?”, I say. (Typical me–I’m a glass 3/4 full kinda girl)

Someone chuckles lightly between their tears, “Yes, if anyone could be a first, it would be Cory. He is the come-back kid.” But noone in the room really believes it is possible.

I believe in the possibility because I know God is in the business of miracles at times. I decide right then and there that my energies are better spent focusing on the possibilities instead of the probabilities. That is exactly how Cory lives his life, always focused on possibilities, and that is how I can best serve him.  I’m not sticking my head in the sand, though.  I know that these God-gifted minds are sharing the truth of what they know with me.

I prepare for the worst but my heart continues to hope and pray for the best. Isn’t that what Moms do?

Then, just when I think we are wrapping up and I am very anxious to get back to Cory, to be in the safety of the room with my Alive Son and absorb things, someone is shuffling papers.  She says, “Under the circumstances, we feel we would put him through undue and unnecessary pain and suffering to resuscitate him if he arrests. And you won’t want to make that kind of decision in the moment…” She is starting to hand me a clipboard with the paper on top.

What is it?” I feel frozen, my mind spinning and garbling information.

“A DNR order.” Do Not Resuscitate. Do Not Resuscitate. Do Not Resuscitate. Do Not Resuscitate.

I am not really here. I know it. Not happening. I say out loud, “This isn’t happening.” And the tears begin again, only now I can’t breathe. How foolish of me to agree to this meeting alone….but I really didn’t know it was THIS. I thought it was bad, but not this.

“I need to talk to his Dad. And if Cory has a moment of clarity, I need to talk to him.” I cannot sign to kill him, which is what it feels like. I logically know that’s not what this is, but I am not feeling one bit logical at this moment. All I know is that a mother should NOT have to sign a paper that says “Do Not Save my son (who was recovering and laughing and walking and conversing only 3 weeks ago) if his heart stops. Make NO attempt. Do Not Help this 25-year-old precious young man with his whole life ahead of him.

Love, Mom.

“Take me instead.” I pray silently while looking at the ceiling and waiting to be dismissed.

“We understand. We can handle that a little later. We will open up this conference room for unrestricted visitors to wait to see him over the next couple days, for those who might like to say good-bye. Family, friends.”

“Okay, thank-you.” I manage to say. I can’t take anymore.

“I need to call his Dad to come back.” I say and I get up, leave and rush into Cory’s room to make sure he is still Alive. He is.

Charlie is home in Arizona only a matter of hours before he hears from me to tell him that he needs to come back immediately. They say our son is dying, could be a matter of days….

Can’t imagine what the flight back will be like for him. Or the drive for Dave and the kids. Or for my Mom or in-laws. Or for the love-of-his-life, Anna, who will drive up from Alabama. Or for his brother Jimmy driving up from Dayton. Or for my sister, flying in from Alaska. Or my nephew flying in from Seattle. Every moment of their journey to Cory, fingers will be crossed that he is still alive when they arrive.

My son in the ICU: PAIN exclamation point

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…

Whatever it is.cory blood blisters

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?”


Alot. ALOT.

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.

My son in the ICU: Bronchoscopy To-Go, please

September 14, 2013:

Cory wasn’t getting the oxygen numbers he needed. They talked about re-intubating him.

Oh-no! We were not going backwards….As if we had any control. But we pretended.

They have to do a scope in his lungs to see what might be the problem.

What’s fascinating in the ICU is everything comes to you. I guess that’s a benefit, if you are looking at the glass even a little full. There was No transferring him anywhere for a procedure where we wait in the waiting room, take a number and wait for the doctor to meet the parents in a room built for 2.5 people to tell you the results….

Nope, the equipment, the doctors, the nurses, everything came right to us. Front Door Delivery, Room 21. Bronchoscopy To-Go please.

“So, they know what amount of medication to give to sedate him properly for the procedure?? We don’t want the same thing to happen that happened with the breathing tube (where he wasn’t sedated enough and was actually awake for the procedure)….just want to make sure.”,  I say to a New-to-us nurse. She had a great sense of humor and knew her stuff.  Lots of casual conversation after a couple days of being together…

“Oh, yes!  They are using Propofol…”Milk of Magnesia”was the nickname…he will be Out. It’s the same stuff Michael Jackson died from.”…..(errrrr….things you don’t say to the parents in the pediatric ICU….we knew she meant nothing by it. It was a jolt, though, to hear at that at that moment while looking at the milky substance pumping into our son.)

cory bronchoscopyAnd, we, the parents, never had to leave. I kept waiting for them to dismiss us. I felt awkward, like a kid who was in the Teacher’s Lounge for lunch, waiting for them to notice I was there and send me back to the cafeteria. But instead, they handed us masks. We were in the back of the room sitting on our Bed/Chair and watched what looked like a Discovery Channel presentation. The doctor was great about informing us of what he was seeing as he went along, and had it not been being performed on my non-organ-functional son, I would have thought it was really interesting and cool.  As they stuffed a looooong long tube into his mouth without any response from him….The upper lobes, the lower lobes, the brachial tubes…

I now visually knew my son from the inside out.

The organization of the human body amazes me. They found blood, but it looked like old blood, not a current bleed.

We don’t have to re-intubate him. Thanks Be.

His numbers are all going up. His bacteria that is detected every now and a day are treated. He will go back to the Bone Marrow Transplant Floor in the next few days. They are just waiting for an open room on the floor.

Back to Normal—coming soon to a theater near you.

His dad, Charlie, buys his plane ticket home to Arizona for two days later.

My son in the ICU….Welcome to the WWE!

September 11, 2013

He’d been on the ventilator about 10 days, and being fed medication the whole time to keep him sedated and comfortable with the breathing tube in. It didn’t quite look like I thought it would at times, because he was in and out of consciousness, still reacted to pain and discomfort, and was very occasionally lucid. Otherwise, he just seemed like he was sleeping alot.

Whatever the current GOAL was…that was our focus….

Current goal: Breathing Tube Removal. Mindset at this time is, “He is getting better, and we will check these last pesky items off the To-Do list and be discharged from the ICU.” His dad, Charlie, decided that when the Cory was off the ventilator, that would be a safe time for him to return home to his job and family in Arizona until further notice. Because if Cory could breathe on his own, then that’s a sure sign of the road to recovery. We all believed that.

So, each day, they slowly backed him further and further off the boatload of medication he was on so they could remove the breathing tube in order for him to breathe on his own.

Welcome, folks, to the WWE!

WWEYes, as in Worldwide Wrestling Entertainment. And as one might (if one was the parent of  Hulk Hogan watching him wrestle), we laughed and we cried through the next (two,three??? It all ran into each other) days and nights…oh, the nights…

The “Made-for-TV” experience began the day before scheduled removal.  It went something like this:

Charlie and I were stationed on either side of his bed, each holding a hand, so excited and expectant as we saw obvious signs of his “waking up”…his eyes open, seeing us, making noises.

Cory is 6 foot 2 inches. He is withdrawing from meds, he is trying to communicate, he is moving….alot. He is not “in his right mind” though. He is somewhere in between reality and sedation….and He. Is. Strong…. and Smart.

And in this in-between state, he has the same goal the rest of us do… get him off all of the machinery and tubes and lines, etc. that have him attached to his pole, the monitors, the ventilator, and the bags surrounding his bed.

His methods? By his own hands, here and now.

He was pointing at his breathing tube, and we explained (again) that he was on a ventilator but that it was being removed soon, blah,blah,blah…..and he grabbed it! And pulled! We were shocked!!! Charlie would grab his hand and pry his fingers off and I would try to keep the tube steady. We would “explain” to his eyes…that looked like they were listening and understanding…that he couldn’t do that. That he would hurt himself. That the doctor would take it out tomorrow. Then we would make the mistake of thinking he understood and accepted what we were saying, we would loosen our grip on his hand and before we knew it, he’d go for it again. and again. and again. And we would explain firmly and pleading with him to stop again. and again. and again. All night long, then all day long.

He was pretty much breathing on his own at this point, even with the tube in, so the next day they uneventfully removed it. He had an oxygen full-face mask on to get his oxygen levels up to speed.

Breathing tube OUT, and one less thing for him to grab. We had pillows covering every place he had medical devices attached to him or inserted into him. And we held his hands with ours 24/7. Sometimes he dozed, sometimes we dozed….until we felt him stir and we were ready. Or so we thought.

Then his mission extended to trying to trying to pull off the oxygen mask, or pull out his IV, his Art-line, his catheter, and his PICC line in his groin. Even the simple pulse-ox that monitored his oxygen with a small bandaid-like wrap around his finger…off.

Moved it to another finger…off.

Moved to his toes, he managed to pry it off with his other finger-like toes….off.

Moved it to another toe and explained to leave it there and why. He would look attentive, like he was listening… then he would scooch it off that toe.

It was endless. endless.

The nurse brought in restraints.

We said, “No, we’ve got him.” We were going to hold his hands and talk to him and reason with him and create barriers with pillows to protect him from himself. We’ve got this. Supermom and Superdad.

Then in came Nurse Jenny, a Godsend, who would join our family at this juncture and walk Through It with us until the bitter end. She was assigned to Cory the day of his breathing tube removal, I believe, (lucky girl)….

At some point, we realized that talking with him in this state was like talking with an over-grown 2-year old determined to unstrap himself from his carseat. He heard us explain things to him, stopped for a moment while we were talking, then went at it again! He was focused. And funny at times, which is weird to say, but sometimes the maneuvers he used to try to get things off and out of him were truly comical. He was like Spiderman, all sly and scheming and flexible.

He had these huge feet and gangly legs and finger-like toes that were up in the air moving around that he tried to use instead of his hands because we were holding his hands from grabbing things. He  literally used his high-school-freshman-year wrestling moves to grab my head with his legs into a headlock at one point…..and none of us in the room could stop laughing! I wasn’t hurt, just stuck… leaned over his bed with his leg around my neck while I was holding his hand with my hands. I couldn’t let go of his hand or he would try to pull something out of himself….Charlie couldn’t let go of his other hand. “Cory, let go of your Mom.”, Charlie barely got the words out between trying to catch his breath from laughing. Jenny, who was laughing to tears as well, had to come over and pry Cory’s crossed feet apart so I could sit back in my chair. What a story Nurse Jenny had to tell at home that night…”One of my patients had his Mom in a head-lock today!”

With eyes open or closed, Cory was going for everything to yank it out of his body. And he meant it.

“He’s withdrawing from the amount of medication he was on.”,we were told.
Ok….annnnndddd, when will this be over?
“It’s hard to tell.”
Oh. O. K. That clears things up.

We were offered restraints again.

“No.”…. We weren’t tying him down.

By day 2 and night 2, it wasn’t funny anymore.  He was becoming more stealthy than us. We would wishfully think every now and then that he was rational when he negotiated with us into letting him scratch his nose or something else benign with a free hand, and Boom!…he would grab his feeding tube instead.

He was saying not the nicest things to us when we kept him from grabbing the medical equipment coming out of him either, which hurt our hearts at times. We all, emotionally and physically, were wearing thin.

And we cried real tears when he got his hand snuck under the pillow and got a very real grip on his surgically implanted PICC line with the collection of tubes attached to it in his groin going straight into an major artery and we couldn’t pry his fingers off….we were fighting, and begging, and pleading and yelling for him to let go. He layed there, looking straight ahead, and continued with all his might to hold on and pull….and Charlie, with his muscle, held Cory’s arm in place, reprimanding him while the nurse and I pried one by one a finger off….then as soon as I’d go to another, he’d regrip the other.  It’s like his fingers alone were stronger than our hands. We managed to free the lines from his vice-grip eventually. Terrifying is an understatement.

Then he finally succeeded to rip something out of himself. His Art-Line (An arterial line is a thin catheter inserted into an artery. It is most commonly used in intensive care medicine  to monitor the blood-pressure real-time, and to obtain samples for arterial blood gas measurements–wikipedia). It was in the under-side of his wrist. Insertion is often painful and is done by a physician. Can’t imagine what it felt like coming out, but Cory wasn’t too phased.

It bled a lot, we were beside ourselves, and I felt like we failed him.

They stopped the bleeding, bandaged him up and they decided not to reinsert it under the circumstances. They took his blood pressure manually instead…

Nurse Jenny, who knew we’d been up all night, said during rounds, “These parents need sleep.”  What??? Rounds (where the 15 doctors for your child in the PICU gather outside of the room to give you the update on test results, medications, plans, ect.) was supposed to be about Cory, not us!! In my sleep deprived state, it felt like she was tattling on us. And she was, but really because she was taking care of us….and Cory.

Restraints were Doctor Ordered for Cory, “Certified Nursing Assistant Patient Sitters” were ordered in, and we were ordered to sleep.

We slept for a few hours at a time, then up to sit with him, listening to him tell us why he needed all this off and out of him and speaking some nonsensical things, and us explaining for the 100th time why it all needed to stay in. It was soooooo great to hear him talking again, though, after 2 weeks of the breathing tube being in. We were grateful just to hear his voice.

I hated to see his wrists strapped to the rails of the bed. Really difficult. But we knew now he could truly harm himself in the state he was in. He continued to be agitated, and to try to weasel himself out of the restraints for the next day or so. And sometimes he did. And his legs and feet continued to attempt to work their way around or sneaking their way up like a contortionist, and his obsession with slipping the Band-Aid pulse-ox off his fingers and toes became a sport. It was a constant putting on, off it came, putting on, off it came….After caring for him, the nurses, the CNA’s, the sitter’s were spent.

After another long day for Nurse Jenny, completely taxed from being in the trenches with us at Wrestle Mania, she stood at the end of the bed to say goodbye to us. Charlie and I were back in our stations on either side of Cory’s bed (we had followed doctors orders and slept some the night before, so the “sitters” were dismissed during the day) and none of us will forget this moment:

Cory’s eyes were shut and seemed to be resting for a few minutes and Jenny instructed us, “You two get some sleep tonight” to us, and she playfully held Cory’s foot and said something about behaving himself.  As she turned to walk out of the room, Cory opened his eyes and said clear-as-day with full awareness and intention, “Thanks, Jen.” We were all stunned!! She welled up with tears of relief and looked him straight in the eyes and said, “You’re welcome, bud.” straight from her soul.

He smiled at her and shut his eyes again. There was not a dry-eye in the room.

He was back.

She covered her mouth as she quickly left the room and I went after her out of concern. She was full-blown crying in the hallway and I hugged her through her tears and mine, and then we began to laugh through the tears, as well, as the obvious bottled up emotion and hope and relief and reflection of the previous days came pouring out. Laughing and crying with gratefulness of the simple, human, loving, thinking, feeling words, “Thanks, Jen.”

I was soon to see more of her heart. She’d only known us a few days, had worked her tail off caring for us and Cory (who was 6 feet tall instead of the customary 2-4 feet tall in a children’s hospital) and this woman still signed up to be one of Cory’s Primaries. (meaning that when she was on duty in our ICU pod, she would automatically be assigned to him). I loved her immediately.

Thankfully, Cory got to laugh with us as well, at a later date, as we retold and reminisced the humorous parts of his WWE days. None of which he remembered, but he was amused. 🙂

I remember thinking on so many days…Sometimes it helps to find laughter when nothing is funny.