The question was posed on a Facebook group I’m part of: “Have any of you had to give permission for life support to be turned off?” Why yes, yes I have. And it’s fucking awful.
When you’ve been told for a week that your son is going to die “any time now, maybe even within the hour,” and then he continues to hold on, you start to wonder if the doctors are right. You look for any miniscule shred of evidence that they really don’t know what they’re talking about. Every flinch, every eyelash flutter, every hand squeeze becomes a flicker of hope.
Until it’s not.
We had been waiting for that day- the day of the follow-up MRI. The doctor wanted to wait one week between scans. The previous one had been done at the Children’s National Medical Center in D.C. That’s when we were first told there wasn’t any time left. But TJ hung on and we got our wish of being airlifted back to our area and to Children’s Hospital of Philadelphia (CHOP).
Back on terra firma and tucked into the ICU, TJ was monitored and had several emergent CT scans over the next few days. During that time, TJ squeezed my hand and made eye contact with me. He was in there! You see, the doctor had tapered of all the medications that were sedating him. He wanted to get a better picture of what TJ could do but that wasn’t possible if he was on versed and morphine drips. Of course, as a mama- toss aside the nurse in me- I clung to every twinge of movement. But that wasn’t good enough for our doctors. EEGs were done- not just for a few hours, but for 24 hours at a stretch.
Then that fateful MRI. It was Thursday, January 7th, 2016. TJ went down early for the test and it took a long time for him to return. He had had what I called “an episode.” Basically speaking, there was so much pressure in his brain that the slightest deviation in saline would cause the pressure to increase and he would seize. This had happened in the hallway on the way back to his room and it hadn’t been the first time.
Once in his room, there was no “he did fine. The results will be back soon.” No. There was only waiting. And more waiting. And then, “They’ve scheduled a family meeting for 3pm.” Then the nurse in me returned. I knew the news was too serious to not be done in any way short of a team effort with a great deal of support surrounding us. They needed time to rally the troops.
It was nothing short of devastating as each doctor told us their opinion. They all sat in a circle: our long-time neurologist, Dr. Licht (who I will treasure always), the neuro-oncologist (she was new to us since our doctor was in China), the ICU attending, the PACT doctor (palliative care), the ICU nurse, and the PACT social worker. Things were said, questions were asked. I flew off the handle at something my husband said and I tore out of the room. I was in an empty long hallway sitting on the tile floor crying. Someone came out to get me. I don’t remember who. I think it was my good friend, Ellen. She is a social worker who worked with me at a hospice agency and had been by my side every chance she could.
We had to make a decision. But how could I? How could I overlook the eye contact and the hand squeeze and the toe wiggle? HOW? HOW? HOW? The doctors told us that those movements were primal. They are not indicative of any quality of life. And I had already seen over the course of twelve days how delicate the balance was that kept the seizures at bay. This was- is- a person who is brilliant, kind, curious, talkative, energetic, loving, and compassionate. What would become of his quality of life on a ventilator, on drips, getting tube feedings, and literally unable to do anything? Is this what he would be? The MRI was actually quite more negative than this. To say that he could’ve lived but with no quality of life- no real life- is an understatement. But I wasn’t hearing that.
But what I did hear- what I saw that spoke to my mama’s heart- was a tear roll down TJ’s cheek. The pain meds had been weaned so far down that he was in pain. The pressure in his brain was incredible. I knew how intense the headaches were in the beginning and I knew how much worse the tumor was. It didn’t take any medical training to connect the dots and know TJ was hurting immensely. I immediately told the doctor to turn the morphine back on.
I slept very poorly that night. Honestly, I don’t think I slept at all. I wanted to believe the professionals- correction, I knew I should, but I couldn’t. I decided late that Thursday night that I would call my medical director from work. He was a kind man and I knew he would be straight with me. I had to hear it from someone who hadn’t been involved in TJ’s care. I don’t know why, I just did. He agreed to come the next morning.
Dr. Ellis arrived early that Friday. He spent a good deal of time looking at all of TJ’s records, from diagnosis through to the last scan. He didn’t rush. He knew this was important to me. Then, when he was finished, he took me aside in the hallway, looked directly in my eyes, and said, “Krissy, it’s time.” He nodded his head compassionately, never diverting his gaze from this horrified mother’s painful eyes. I wasn’t his co-worker at that point. I was a mother watching her son die. He honored that pain and attended my silent agony.
And that is when I was finally able to make the decision- with my husband- to give TJ peace. Peace from IVs. Peace from EEGs. Peace from seizures. Peace from MRIs. But most of all, peace from the pain. We waited until everyone arrived and had the chance to say their goodbyes. Extended family, friends, grandparents, then siblings. The Child Life team made handprints for anyone who wanted them, casted his hand, and made a beautiful platter of all our hands- mine, TJ’s dad’s, and his siblings’- circling TJ’s. As the night wore on we sang to TJ and read poems as we held hands and leaned on each other.
I slept next to TJ that night curled up next to him in the ICU bed. Others found chairs and couches and benches and pieces of the floor to sleep on. The staff were incredibly attentive. TJ’s heart was strong. Many hours passed before he left this plain. And I stayed by his side every minute of every hour. When they told me he had passed, I sobbed. When they told me the funeral home was there to get his body I couldn’t let him go. I laid across his body and wailed. My sisters and mom had to quite literally pry me away as I stumbled down the corridor of the ICU.
left my side
I remember it was cold outside. I remember being shuffled to the car. I remember being physically numb, mentally checked out, and emotionally incapable of making any decision. The next few days were a blur of activity, all leading up to TJ’s funeral. Decisions had to be made. Eulogies had to be written. Photo posters had to be assembled. Music had to be selected. The number of people who helped us that week was innumerable. I have no doubt there were people helping I didn’t know about. People showed up. They showed up with meals. They showed up with groceries. They showed up with cleaning tools. They just showed up. I could go on for some time telling of the people who helped us, who loved us. But that is a story for another time. An important story for another time.
So, yeah, I have had to tell the doctors to turn off life support. And I hope you never have to. But if you do, I pray you are surrounded with a circle of love.
