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: 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.

My son in the ICU: Be careful what you wish for….

Late September 2013:

We were moved One Day from the smallish cramped room on the ICU unit with This window-of-worry:wpid-img_20130916_180134_516.jpg

to the most beautiful Penthouse-like room on the unit with These windows-of-hope(and that’s not all of them!!):cory family

…..We had actually admired this room from next door for weeks before, and once stated  to a nurse who was attending to Cory,

“Wow! That is a magnificent room! The light, the windows!” , I said enviously as I walked passed it and into Cory’s room that was half the size, dark and seemingly cramped in comparison.

The nurse replied, “Ohhhh, you don’t want that room.”

“Why?”

“That’s the room that goes ‘into the light’, …if you know what I mean…. Patients who go in, don’t usually come out.”

oh.

So, when, a couple weeks later, when Cory was actually getting better (a very relative term) and we were filled to the brim with hopefulness….her words couldn’t help but enter my mind as we rolled his bed into that grand corner coveted room on the floor that he was transferred into.

It was double the size, quadruple the windows.  The Sun blessed us all…..it was like arriving on a beach after being in a basement for weeks. We all soaked it up and were SO grateful for the light and space. It was a gift.

“I’ve spent my life searching for spiritual meaning…” Cory was telling the visiting female pastor that happened to be with him as he changed rooms. They had bonded. He opened up to her when she visited him daily. “I’ve found it in Nature most of all. And in Solitude. I love solitude.” She was a beautiful and peaceful and accepting soul. She was exactly what he needed. Funny how God always Provides so precisely and timely.

This room allowed Cory to come back to life in Glory. In sunlight, with many family members around him, with room to Breathe and Work and Rest and Heal…. And come back he did, mentally and emotionally at least.

Physically, well….that was another story. That would be a long, long road.

My son in the ICU: …and then LOVE came in.

Late September, 2013: Cory made an amazing turn. He stopped hurting, we started Hoping, he came back to us mentally and was weaned off his pain medication. Doctors used words like “Miracle” and “Never been seen”.

And Love exploded.

cory & anna cropAnna, his love and friend,…who the moment she got word that he was dying, up and left her home and job in Arkansas, drove 9 hours straight, and came to him. The moment they saw each other brought the hospital room of men and women to tears. The connection, the pure  love witnessed there was more moving than any novel ever written. I can’t even begin to describe it. He came back to life like nothing we had seen so far. She saw beyond his pain and sores and scabs….it’s like none of that was there. And he looked at her like an angel arrived. Charlie even joked, “He’s never looked at me like that!”. Her arrival on the scene brought joy and healing and agape love to Cory and to all of us that witnessed the most tangible connection of two souls we had ever seen. And she stayed with us and with him. Now there were three of us rotating chairs and parent beds at night….and Cory or we wouldn’t have had it any other way. This was Love.

wpid-img_20130917_155114_312.jpgAnd his friends came, all drove, walked or wheeled in and sat around him at what they thought were the end of his days and cried and held his hand and brought cookies and notes and reminisced for him when he couldn’t respond, This was Love.

cory familyAnd family and cousins who used their saved pennies traveled for miles and miles from Seattle, Arizona, Alaska, Tennessee, and North Carolina, and the Uncle who poured his heart and talent into writing and recording Cory’s Song…and the grandparents near and far who held vigil for days, or sent communication and prayers across the miles, or made sure we ate and slept, This was Love.

His brothers and sisters, who sacrificed so much during this time (schooling, time with friends, absent parents) or had countless family meals in the hospital cafeteria or countless hours at their dying brother’s bedside or made wallets out of duct tape for Cory’s lottery money  cory lottery money……This was Love.

Dave&Debbie who stepped up and ran the whole Home Show solo and those family, friends, teachers, and leaders who pinch hit in my other children’s lives when I was absent from my (and their) life while I cared for Cory…This was Love.

wpid-img_20130916_180134_516.jpgAnd the laughter in the room when the crowd was there, piled up literally on top of chairbacks and arms of chairs and all over the floor (I’m sure the PICU team questioned allowing us the go ahead to let family/friends “come thru”, because they surely came but didn’t necessarily go “thru” ), the jumping to their feet and to his bedside to hear Cory muster a word and do anything at all we needed to help.
This was Love.

And the endless emails and texts and care packages and visits from my little friends and big friends and new friends and old friends…This was Love.

And those who sent essential oils and did Reiki and sat silently and peacefully beside Cory and delivered us homemade meals…This was Love.

And the doctors who treated us like family– who showed up on their off days, pulled up a chair and spent their precious little free time with us and chatted with Cory about his adventures, or who offered to personally go pick up our dog from our home to visit Cory, or promised to make a trip to Utah to hike with him when he was on his feet. And they meant it…

This was Love.cory dr. mary (Dr. Mary <3)

And a group of my dear women friends:  daycare moms, church women, old and new friends showed up one day  at Cincinnati Children’s Hospital and brought me snacks and gift cards and written sentimentscory sheyna moms and they went in the church chapel and grasped my hands and prayed with me. Prayed for my family and for my son. They showed up and lifted me up and held me up when I felt like I couldn’t fake my way through one more day, with their lasting embraces. If I shut my eyes, I can still feel it. This was Love.

wpid-img_20130917_131120_441.jpgAnd Jenny….the nurse who jumped through more hoops than I knew to make an Outdoor Trip happen for Cory. 8 people transferred him to a stretcher and rolled him and his lines through a maze of doors and units to get him out to the patio.

And Brian, the music therapist who brought us the blessing of guitars and egg shakers and music to Save Cory. They knew him . They knew he loved outdoors and he loved music, so they made it happen for Cory. From love, not from their duty of their job. wpid-img_20130917_103127_272.jpg

And the close friends of his who gathered around his stretcher that day, grabbed an instrument and played music with him for an hour while he laid horizontally and could barely strum….This was Love.

And his old high school friend who was there that day and in tears asked me…”I just need to know, does he know Jesus?” and I said, “Would it make you feel better if I directly asked him?” and she said, “Yes.” So I went to Cory, outside breathing the first fresh air he’d breathed in months, and I said, “You know how much she loves Jesus, right?” and Cory said, “Yes” and I said, “She wants to know if you love Jesus.” and he said after a moment of thought, “Yes, yes, I do.” and I told her and she looked relieved and took a deep breath and smiled. This was Love.

And his very best friend, who was his sidekick for many years and they took care of one another endlesslywpid-img_20130918_133741_111.jpg ,that Lost her Job for staying at Cory’s bedside for days on end. This was Love.

 Then Abby , Cory’s cousin in Colorado, started a Love Cory Day (that lasted weeks) on September 19th…. she said “Hi guys! we want to celebrate Cory (my cousin) tomorrow. He’s a cancer fighter and a truly amazing kid. To show some love everyone please wear anything red and post a picture. Please support♥” HUNDREDS across the Ohio and the country donned red shirts and made signs and smiles cory abbycheering him on….

This was Love.cory love cory day

love cory day laraIt spread across the nation, literallycory kids, and a friend who’d never met Cory made a Facebook emblem- that people we knew and lots we didn’t- shared on FB and posted as their profile pic in solidarity and support for the miracle we were witnessing ….it said, “Go, Cory, !!” …This was Love.cory go cory

And the prayers, and the pictures, and creativity came rolling in…..Cory once said to me, “Those Prayer Warriors are a real deal, aren’t they? They aren’t messing around.” ….This was Love.

I could go on and on. It all helped. It was all was provided at the exact moments it was needed, because no doubt about it…..God IS Love and it’s the only thing that matters. I didn’t just read it on a page, I lived it. It was overwhelming and precious and it truly carried us.

At times like this, everything else falls away, and you just see hearts…it’s the most beautiful thing.

Cory’s last Facebook post on October 8, 2013, while fighting back mentally and physically from his brush with death.

“Can you get me on Facebook?”-C

“Sure, do you want me to read or type?”-Me

“No, I will do it.” -C

It took him 45 minutes to type this one finger at a time while I held the iPad up on his torso.

First time being on here here in
quite awhile, and my activity will likely remain minimal, but my mom has been keeping me up to date with all the Love, so I wanted to acknowledge and return some of it really quickly. You all kick ass.” –Cory Jay

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.

Hmm.

“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….it takes many hands.

So after the first few days of shock, sleep deprivation, and gradual acceptance of the circumstances we were in….

…. my New Life and New Job began on Floor 5, Pediatric ICU, Cincinnati Children’s Hospital.

I knew I had to get over myself. At some point, we have to pick ourselves up, dust ourselves off, take stock of the situation, and get to work, don’t we….

I slept, kind of, finally. There was only one chair that pulled out into a “bed” in that room. Cory’s Dad and I took turns sleeping in a chair stooped over Cory’s bed onto a pillow or in the pull out bed. We played the Parent Sleep Room Lottery every day (a separate sleeping room for one, no windows….there were only a few for the whole floor). But because the unit was fair to all the parents on the floor, we “won” every three/four days or so.  Then both Charlie and I would get a bed for the night. It was nice to be in the pitch dark on a real bed, but it felt too far from Cory and I slept with one ear open in case my phone might ring from the room down the hall.  Most nurses did a fantastic and considerate job of using flashlights to work at night in Cory’s room, so I preferred to just sleep in his room.

We had a routine in the morning… taking turns leaving to get coffee, eat, shower, dress, taking care of phone calls for work, business, our families at home…ready to face what each day might bring.

During the day, I started my PCA (Nurses Aide) training (not really, but felt that way). In these first weeks, we had different nurses every day and every shift. I learned to understand how critical Cory’s situation was by the number of nurses assigned to him.  In the first week, there were 2 nurses whose only job was Cory every day and every shift. They worked the whole time.I mostly didn’t know what they were doing, but I asked enough questions to probably be annoying, and I asked where and how we could help…..and they told us and they taught us. Turns out many loving hands were needed for the simplest acts of care. ❤

The first order at hand was his blistered back…..we were assigned a skin-care-specialist Nurse at first who taught us how to turn him, carefully pull off his non-stick bandages, “clean” the skin, prepare the next bandage with a cream and netting that kept it from sticking to his blisters and open wounds, and how to keep everything sterile in the process (blue gloves were my newest accessory)….the “bandages” covered his whole back. He was being treated with the same protocol as a burn victim, and even though he was sedated, he would wince with pain when he was turned and when the bandages were changed.

Every new nurse would bring new knowledge, or something they’d picked up in their experience that collectively helped Cory and his comfort or safety. For example, because Cory was on his back, the bandages would often bunch up or fall off his back. An “old school” nurse was assigned to him who sat herself down and hand-sewed a vest out of a gauze material to keep his bandages on, another nurse knew a trick for turning him that made it much less painful for him, another was a Pillow Queen that staved away bed sores, and another came in on his day off to cut a bandage for Cory’s pic- line that he designed especially for Cory to keep germs out that no one else knew exactly how to do….the list goes on. and on. and on. These may sound like not big things, but to Cory, immobile and in pain and should have been the “Boy in the Plastic Bubble”, they were invaluable contributions. These were just loving gestures of time and teaching offered because they cared. This was Over and Above the 100 other juggling acts they were managing that stemmed from their years of education…medication and lines and charting and sterility and numbers and math and science and executing directives of putting square pegs into round holes.

We learned where to get our own ice water, our own bed sheets and towels, our own scrubs if we needed them, ect.  We tried hard not to expect the nurses or aides to “wait” on us on top of their already over-burdened To-Do lists. But they would have if we asked.

Our He-roes and She-roes.

I paid attention to every instruction. When new nurses would come in, I felt awkward at first correcting the way they might be doing something for Cory, but they were so gracious…knowing we had already had witnessed and done it many times. Eventually, the nurses passing the shift baton would say, “Ask the parents if you have any questions.” or they would tell the incoming nurse that we would do certain jobs ourselves and the nurse could assist. Eventually, the awkward went away, because we were a Team. Charlie and I were the “constant” in Cory’s care because we were there all the time, and we were his advocates because he couldn’t speak for himself. They were the Pros. We were all learning from each other on Cory’s behalf, and the tasks were aplenty. I took my new job very seriously and I learned more in two months than I could ever blog about in years. Not just medical jargon or protocol, but about People and Hearts and Life.

The nurses, the staff, the doctors, the parents, the family, the friends—the first Team Cory.

(About those blisters—the Infectious Disease Doctors decided it was GVHD.)

Campath was sent in to suppress his immune system so it would stop attacking his skin….It all sounded so backwards. Trying to build his immune system, but having to suppress it…but not too much.

This on top of his Respiratory System, his Urinary System, and His Digestive System being aided by Gizmos and Gadgets going in and coming out of every orifice.

At this point, I still had NO DOUBT that he would make it. I adopted Cory’s mindset—I just focused on each hurdle (no matter how colossal it might be) as a bump in the road on his way back to Living Life.)

“Hoping for flatter ground and some sunshine tomorrow. I miss the sun. I’m tired of these clouds and the wet. Fingers crossed!!”–Cory Jay Powell, Day 33 of his cross-country bicycle  journey.

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.