What began as a familiar surgery turned into a nightmare for our entire family.
In November 2020, Julianne was diagnosed with a cancerous tumor in her small intestine, which required the Whipple surgery to remove it. It wasn’t the first time the family had learned of this complicated surgery—her husband, Jim, had the same procedure less than three years prior. (Sepsis and Cancer, Sepsis and Surgery)
But with a familiar doctor and hospital at hand, Julianne went in for surgery on December 7. While the surgery went well, she did need to receive blood after experiencing a bleed within the surgical site. But for the most part, the first week (of an anticipated two week hospital stay) went well.
Unfortunately, the surgery occurred at peak COVID-restriction time for hospitals in our region. No visitors were allowed, and communication was done by phone and video chat. It was hard to stay in touch when Julianne was dealing with recovery, sleeping with pain meds, practicing breathing exercises to help her recover, going for frequent scans, and walking to regain her strength. An infection was also identified near her wound site, and antibiotics were administered to begin clearing it up.
Approximately eight days after surgery, she took a turn for the worse. She began requiring more oxygen and her doctor decided it was time to move back to a more-heavily monitored floor. That night, Julianne stopped breathing while surrounded by hospital staff, and was quickly resuscitated. She had experienced Septic Shock.
This came – seemingly – out of nowhere. None of her family, nor her doctor, anticipated this situation to occur. At only 62, Julianne was known as one of the healthiest individuals who rarely had health problems. Was it her immune system after surgery? Was it a result of the blood transfusions? Was it because of the cancer? There were too many “what ifs” and questions that couldn’t be answered.
After being resuscitated, Julianne was put on a ventilator, sedated, given pressers to raise her very-low blood pressure, and put on numerous medicines. She made improvements that following week and began responding to hospital staff and our voices during calls. By two and a half weeks, she continued improving slowly, could nod her head and wiggle her fingers and toes, and even mouthed a few words to us, but she had the occasional setbacks.
As the weeks continued, blood clots led to a blood thinner, blood thinners led to bleeding, and then the change of medicines delayed the clots from disintegrating. Two weeks on a vent led to a temporary tracheotomy, so she could have breathing assistance for the following weeks. Feeding tubes were administered; PICC lines inserted and removed; antibiotics stopped and started; and more. Her abdomen incision had to be reopened and washed out to avoid further infections, or septic shock, from happening again.
Four weeks in, we were allowed to visit her in the hospital one time—something that I still find completely unacceptable in this scenario. Shortly after, another surgery was needed. The complications from sepsis were taking a toll and Julianne’s motivation to heal was being strained. Her gastrointestinal system wasn’t healing from surgery, and a few holes/leaks occurred, likely due to the sepsis. She was stable, but things were not moving quickly or in the direction we were all hoping.
On the morning of January 11, Julianne passed away. A full five weeks since her surgery. The complications and destruction that sepsis caused are indescribable. She should have been home two weeks after surgery, and instead, had to fight for her life for more than a month, alone, in the hospital. While I’m not sure if this could have been prevented with us by her side (in person), I do know it would have made a huge difference in her motivation and recovery.
The hospital has since adjusted its staffing procedures for Whipple surgery patients, especially during the pandemic. I can only hope that everyone is re-educated on sepsis warning signs to prevent this from happening in the future.
Since this occurred, I have taken the initiative to spread the word about sepsis in our state and among our family and friends. Ironically enough, since this all occurred, we have known a handful of people to get diagnosed with sepsis. It is much more common than anyone realizes, and knowing the signs and symptoms is critical to improving a patient’s chances of survival.
Please, please, please be an advocate for your loved ones and take action if you are concerned about their health and well being. Do not feel like you are bothering the hospital staff for updates—you HAVE to regularly talk to the medical professionals monitoring your loved ones. You never know how much of a difference it could make. And in the end, if it doesn’t seem to help the situation, at least you can say you tried.
I love you, mom. Forever.
Source: Amanda, daughter