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!
Yes, 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.