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

Tuesday, September 17, 2013

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

“Mrs. Powell, hello.”

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

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

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

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

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

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

“Yes.”, I well up with fear tears.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“So, there’s nothing we can do?”

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

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

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

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

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

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

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

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

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

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

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

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

Love, Mom.

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

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

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

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

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

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

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

  1. Dear SHEISMANN2,

    My name is Ashlee. I’m co-founder of the Youshare Project, with the mission to connect people around the world through true, personal stories. I recently stumbled across your blog and read the above post entitled “My son in the ICU, ‘I’m very sorry…’ they say.” It’s an incrediby compelling, intimate, and beautifully written story about a single moment you experienced while your son was battling for his life in the ICU, yet it says so much more. I think it would make a wonderful youshare, because it would let others around the world experiencing a similar situation or feelings know that they are not alone.

    If this sounds interesting to you, I would love to email you directly with more information and formally invite you to adapt your story to youshare and share it with the project. You have my email address and website. I hope to hear from you soon.

    Best,
    Ashlee
    http://www.youshareproject.com
    ashlee@youshareproject.com

    Like

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