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???