No, it’s not propofol awareness day, but thanks to Michael Jackson’s untimely passing (one year ago today) the drug “propofol” has entered the realm of common knowledge. I’ve known about propofol since 2004 thanks to stupid cancer. It’s the drug of choice for anesthetizing pediatric oncology patients. Once administered, they’re out like a light. Once the infusion is stopped, the recovery time is fairly speedy. It appears to be a good drug unless you’re using it illegally for a sleep aid.
Ben’s getting some propofol in about one hour. While he used to have propofol for nearly every scan and procedure, he’s graduated to needing it only when bone marrow biopsies are performed. He does not need it for scans and radiation since he’s able to remain still, but for the biopsy, it’s a very painful procedure and he needs to be anesthetized. A bone marrow biopsy requires the doctor to take a corkscrew looking device and drill into his hips to take a cross-section of bone. Most hospitals take bone samples just from the back (or the butt dimples) but here at MSKCC they take samples from the butt dimples AND the front of the hips. In other words, it’s a “four point” bone marrow biopsy. They just want to ensure that there’s absolutely NO disease in the bone marrow and this four point procedure is more comprehensive than the “butt dimple only” procedure. Would you want to be awake for that? Me, neither. Bring on the propofol.
During Ben’s initial treatment for neuroblastoma we lived in Ohio. During one of Ben’s routine scans he was hooked up to propofol so he would remain still. Remember, he was only two-and-a-half when he was initially diagnosed. While Ben is very compliant it’s ridiculous to ask such a small child to remain completely still for an hour long scan.
The propofol administration is fairly labor intensive. It requires an Emergency Room doctor to be present to administer the propofol and remain for the duration of the scan to ensure stable vital signs. I believe that the administration of propofol was fairly routine. Routine enough that the doctors and radiology technicians were discussing plans for their weekend while going through the motions of Ben’s scan. Hey. I get it. It’s just a job to them. They have a life outside of their work even if we didn’t have much of a life outside of neuroblastoma.
Listening to them throughout the course of Ben’s treatment was sometimes very difficult. I’d hear about their children having trouble at school. I’d hear about their car trouble. I’d hear about bad dates. I’d hear about normal, everyday life. Admittedly, it was very difficult to hear about their children. “Joey made three goals during last week’s soccer game” or “Heather made honor roll this semester”. Hearing about their normalcy alienated me in a way that I couldn’t explain. And it wasn’t like they were telling ME about their children’s achievements, they were talking to their co-workers while I was in the room watching my son get scanned for possible cancer activity. Of course, their normalcy would often throw me into a tailspin as I scrambled to celebrate my sick child’s achievements. Yay! Ben scored the best possible score on his MIBG scan. Ben has a steady girlfriend despite the statistics that long-term pediatric cancer survivors live out the remainder of their lives in their parent’s basement playing video games. My son excels at chemotherapy. He always wakes up .10 seconds faster than the average propofol recipient. Excellent!
So, when the staff in radiology began talking about their plans for the weekend I tried to tune them out a little bit and just focus on Ben. Watching him breath. Making sure he didn’t move which would cause them to have to start the scan over. Praying. Hoping. Sometimes silently crying. And then the discussion in the room turned to concerts. The ER doctor started talking about seeing Bruce Springsteen in concert and how it was the greatest show he’s ever seen. Myself, I’m not a big fan of The Boss. Well, the main exception being the song “Candy’s Room”. But otherwise, I can’t see myself forking out ridiculous amounts of money to go to one of his shows, especially waiting to hear the one song of his I enjoy, which never really hit the mainstream and most likely would not be played in concert. What’s the point? That’s right. No point at all.
A random voice shook me out of my thoughts to tell me that Ben’s scan was nearly over. I breathed a small sigh of relief and continued to watch him sleep. Then I watched as the numbers on Ben’s monitor started dropping. Oxygen levels bottoming out. The alarm starting it’s piercing screech of something being drastically wrong. The numbers kept dropping. The conversation about Bruce Springsteen was halted as the staff started to swiftly move around Ben. I was pushed backwards by the staff, pinned between the wall and the ER doctor as they tried to wake up my son.
The numbers on the monitor kept dropping. I could hear my thoughts swirling in my head. I was crying out “what’s happening” in my mind but nothing audible was coming out of my mouth. I was pinned. Watching my son’s lips turn blue. Watching his face turn blue. Watching the life drain from him.
DO SOMETHING. (why can’t I say it out loud?) DO SOMETHING! DO SOMETHING!!!!!
Someone placed a mask over my son’s nose and mouth and started working the bag to get oxygen to him. No improvement.
Oh, God. DO SOMETHING DO SOMETHING DO SOMETHING. I’m watching my son die! His life is leaving him right before my eyes. My last moments with him are of me pinned up against the wall while the ER doc tries to revive him. Screaming monitors. Staff scrambling around him. This was supposed to be a routine scan! Stupid cancer. Stupid Bruce Springsteen. COME BACK TO ME, BEN! YOU CANNOT LEAVE ME!
Much too slowly the monitor started to record a strengthening pulse-ox. Ben was breathing again on his own and the color was coming back to his face. His lips were still tinged with blue when I cut through the wall of staff and leaned down to kiss his precious lips. I picked him up and started singing to him as he struggled to regain stability. Adrenaline cut through each muscle that had been taut with tension and I started to violently shake. I was suddenly exhausted. Thoroughly relieved. A mixture of tears streamed down my face releasing my fear and embracing my joy.
You’re still with me. You’re still here. You’re going to be okay.
I think I’m going to throw up.
I learned later – much later – that the ER doc had administered too much propofol and that’s what caused Ben to crash. As the scan was winding down, instead of stopping the propofol he pushed the rest of what was in Ben’s tubing straight through to Ben’s little system. Ben was overloaded. And it almost killed him in the process.
I blame Bruce Springsteen.
Admittedly, I get anxious whenever Ben’s scans come around, especially when he has to be sedated. And today is one of those days. Any minute now they’re coming to get him. Hook him up to propofol. Put him to sleep. Drill into his back. Drill into his hips. Causing him pain in the process of looking for signs of neuroblastoma, the stupid beast that is trying to kill him.
So my recommendation is “DON’T try propofol at home”. Leave the propofol administration to professionals, especially those who are competent and paying attention to what they’re doing.
And especially aren’t fans of Bruce Springsteen.
UGH. I’m grateful for our docs and nurses and I know they’re human, but there were a few too many errors here and there to ever let me feel like I’m not “on guard” all the time.
My brother’s doctor OD’ed him with his chemo….a miscalculation cost my brother his life.
I don’t think you can ever let your guard down.
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