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….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…..to 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.

 

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.

My son in the ICU: We are Going In.

August 31, 2013

I wrote Cory a text saying I would come a little later tonight to spend the night with him in the hospital because I was going to watch a movie with the family first. (I would spend the nights on the weekends with Cory in the hospital. It was Saturday. I was trying desperately to juggle all that all needed from me…Impossible was another word for that.)  I was, on the inside, excited that it was a three day weekend….I could spend three nights with him, my recovering child/man.  He was doing as expected since his transplant, considering.  I was always trying to balance not “mother henning” him with “being there” for him. He was 25 after all, not 15. I WANTED to smother. But I think I did a rather good job of self-control to respect his Love of Solitude vs. my Love for Him.

I was literally getting in my car to leave when I got the call.

“Mrs. Powell (which Im not, but I answer to both, because I know they mean motherofyourson) …you should come right away.”….”Im on my way…whats happening?”….”Cory is in Septic Shock, he started a fever 30 minutes ago, and now….”…..  “WHAT? WHAT’s THAT?”…..”I cant give you any more information until you are here…..hurry.”…….”HURRY????”….I was on I-75.   I sped to 90 miles an hour saying “Please God, keep him alive” over and over and over and over and over.  I imagined a police car behind me trying to stop me for speeding….I decided ahead of time that I would keep going. He could ticket me in Cory’s hospital room.

I dont remember getting to his room other than I ran and ran and ran. I couldnt be fast enough. I ran into his room filled with 15 medical personel. I squeezed between people like in the VIP section of a concert…..he looked at me with a “help me” look that is burned into my brain. I grabbed his hand and said, “Im here.” He was sick…he was suddenly, inexplicably, really, really sick.

I was just was here last night. We played bananagrams, he won.  We played Palace (which was really called Shithead, but I insisted on finding the real name for the game so Miss Sheyna wouldnt have to say Shit….). I love that he humored me/respected me and called it “Palace” for me…now, I could care less what it’s called. We kept score on the whiteboard of the many, many games of Palace/Shithead we played during his hospitalization. In the end, he won, I lost. How appropriate. cory keeping score

He was sick and helpless and sunken in his face and labored breathing and ohmygodhe’sdying. I never lost eye contact with him…I was telling him everything would be okay when it wasnt, when I didnt know. They were talking and sticking and covering and pumping and watching numbers and pushing meds…. Then they pushed me. They moved me and threw an oxygen mask on his face and I saw his eyes roll back in his head. And they unlocked the locks on his bed and rolled. Fast. Out of his room and down the halls….15 people rolling my son and his “friend”, his pole, with all of the medications attatched that were flowing into his arm. And I went too. We were One Being. Cory and the medical personnel and his “friend” and Me. Rolling…..I can still hear the sound of the wheels on the linoleoum. Pshhh, Pshhh, Pshhh, Pshhh…….

emergency-workers

We were in. New doctors, new nurses…lots of them. One beautiful black woman talking to Cory, so close to his face, comforting him. “We’re going to help you.” “Its ok, sweetie, we are taking good care of you.” She must’ve seen the panic in his eyes. ICU nurses are saints. Saints. Saints I tell you….. I was in the back. I kept trying to get to him, but trying to respect their work, the work of those who went to college 1001 years to SAVE MY SON,….I didnt want to interrupt their saving my sons life. I. Just. Wanted. Them. To. Save. My. Sons. Life. , But I would reach in every now and then…for his hand… to touch his face…his leg. I wanted him to know I was there. “Can you stand back here, Mom?”said someone smarter than me….”Yes.”

“Excuse me, can I ask a question?”, I say to someone I think is a doctor, while they are pumping and pushing and prodding. “Yes?”, she says. “Should I call his Dad to fly in? He lives in Arizona.” …

“Yes.” she says, “I would.”  I did.

It’s getting crowded in there….Hello, GVHD

Mid-late August 2013:

Have you noticed the initials….BMT, BK, GVHD….well, this is just the beginning. The scary part is when you understand what it all means and you are NOT a medical professional….you are just a Mom.

GVHD stands for Graft Vs. Host Disease. And Cory has it…a mild case considering, but he has it. His new marrow is attacking his body like it was a foreigner (shhhhh….it’s not supposed to know). The New SuperHeroes (immune system cells) are confused. They are in a new place and there are different things (likely because the match wasn’t exact) and this new immune system is recognizing the Very Body it’s in(a.k.a. Cory’s Body)  as foreign, as Enemy, and is attacking.

This is two/three weeks since C-Day (transplant “Cell-Day”) and Cory’s skin is discolored and dry and itching. Every night I come, I slather him with Johnsons baby lotion (haven’t done that in 20+ years)…. His back and his arms and his neck and his face and his chest. He is weak. And really, really itchy. If I could type 15 “itchy’s”, I would. We bought him one of those wooden “itch-yourself” hands from Cracker Barrel. It’s his best buddy.

He slowly takes himself to the bathroom 2x a day and literally takes an 1.5 hour shower.

“What are you doing in there?” I call in because I’m making sure he’s still ok…and breathing….and upright.

“Peeling off my dry skin. It’s so uncomfortable. Can you please go buy me powder?”

I ask the nurse for powder. She will put the order in and it will come the next day. He needs it now. I tell him I will go to Walgreens (at 11 PM). He says, “Please bring Tums, too.” Tums. OK.

slowClifton, OH, in Cincinnati, is not the place to be buying drugstore items at midnight. But I go….I look around, bolt from my car into the Walgreens. I find Bond Powder and multi-colored Tums. Does he really think this will help the nausea and vomiting more than what’s already prescribed to be flowing into his veins??  Even if there is the chance of psychological relief coming from a bottle of Tums, I will risk my life to get it for him. And I DO feel as though Im risking my life….

At the check out, I ask the officer at the front door (yes, there is an officer at the front door of the Walgreens with the barred windows in Clifton, Ohio….just saying, my instincts aren’t that far off)..

I say, “Will you please walk me to my car?” And he does. And I have Gold Bond Powder and Tums for my postcancerous, bonemarrowtranplant son, IN HAND. I feel a little like a super-hero myself as I close my door and “All-Lock” as fast as I can.

He is uncomfortable, and obsessed, and damn that skin…it’s definitely attacking his skin. It is literally peeling off, especially his toes and unmentionable places. Whole layers of dead skin just hanging there. And it itches and it hurts. And his eyes…they are super dry and hurt and blurry vision.

There is Acute GVHD and Chronic GVHD. The Acute is temporary…the new cells settle in in these first few months, and adapt and believe this Body is where they Belong. Then there is Chronic, where the cells never quite fit in….and it’s forever, the GVHD flare-ups and battles. But the patient IS alive, and IS living, and IS a Dad or a Mom or a Daughter or a Son…..and they smell and see and love and feel and touch and hug, but they continue to suffer and be treated for the GVHD—never quite 100% because of those stubborn foreign cells…..but, it sure beats the alternative.

Well, at this juncture, we don’t know if his GVHD is acute (which it probably is) or chronic. Before 100 days post-transplant is usually considered Acute, if symptoms occur after 100 days, it’s considered chronic, to fight and treat and flare up ongoing.

Cory is truly, just grateful to be alive, but isn’t afraid to say, “This part sucks.”, if it was warranted….and GVHD does suck. It can attack any organ. (Just through listening and learning and googling, I’ve picked up that the digestive system being attacked is bad,bad news.) So far, it’s just Skin and Eyes for Cory, so we are good. whew…Just a couple of scuffles.

He’s got this…..right??

I come in the room and he is half-asleep and I place the Gold-Bond and Tums on his food tray full of uneaten food that he has wishfully ordered and can’t eat.

As I unbag it and squeeze the items in between his melted milkshake and sandwich plate, and say, “Here’s the powder and Tums…is this what you wanted?”

“Yes”, he says weakly, and is finally finding rest as his eyes slowly open and close. Some meds must’ve kicked in. I’m grateful.

As I turn around to head to the chair/bed I’ll be sleeping on, I hear,

“Thanks, Mom.”

Hearing that chokes me up….If only I could really do something.

“You’re welcome, buddy. Wake me up if you need something in the night.”

“mmmm…hmmmm.” he says.

Sleep tight.