Sue started feeling ill on the evening of Wednesday, August 6, 2014 with initial symptoms of fever/chills, body pain, particularly in her neck, and a sore throat. She continued feeling ill on Thursday, unable to sleep and experiencing restlessness throughout the day and evening. Jay took her to the ER at approximately 1:30 AM on Friday where she was diagnosed with a viral infection. Sue felt worse on Friday, but the doctor told us she would feel worse before she started feeling better. By Saturday morning, Sue had started experiencing nauseousness and diarrhea, so Jay rushed her back to the ER a second time. Despite excruciating pain and severe weakness, Sue insisted on not using a wheelchair, instead walking into the ER with a tremendous amount of assistance from Jay. Within 5-10 minutes of checking into the ER, Sue walked to the examining room, again with a tremendous amount of assistance from Jay. Unbeknownst to us, this would be the LAST time Sue would ever walk on her own 2 feet....
The second ER doctor said he thought Sue had urosepsis from a urinary tract infection and told us Sue needed to be transported to the ICU. By now, the pain in Sue's arms was excruciating and her blood pressure was 68/42. Sue was transported to the ICU by ambulance, sirens blaring and lights flashing. Jay went home to pick up Tyler and they headed to the ICU. Sue was receiving broad spectrum IV antibiotics and pain killers, which masked the criticality of her condition and gave us a false sense of security. At Sue's urging, Jay and Tyler left for home shortly after 6:00 PM with strict orders to get something to eat, rent a movie and bring Sue's Nook on
Sunday so she could read.
When he got back home, Jay started researching sepsis/septic shock and couldn't believe what he was reading. The symptoms for septic shock were consistent with what Sue presented, including no urine output and dangerously low blood pressure. The mortality rate for people in septic shock was 40%-70%! How could this be? Sue was in a fight for her life...Jay immediately left to go back to the ICU to be with Sue. He arrived shortly after 9:30 PM and stayed with Sue until 2:30 AM, ensuring she was sleeping soundly before heading home for the night.
Jay arrived back at the ICU at approximately 9:00 AM Sunday morning to spend the day with Sue. He was shocked when Sue's RN quickly pulled him aside and explained that she had crashed and was now on a ventilator. The reality that Sue had at best a 50% chance of survival hit Jay hard, and after spending some time with Sue he began the dreaded process of notifying family. Jay spent the next 30 hours by Sue's bedside, vowing to not let her be by herself again.
Sue and Jay were in an all-out war on sepsis! If Sue was going to survive, this was going to be a 24/7 proposition until further notice. Relying on his military background, Jay established a strict set of rules for Sue's ICU room. Unless directed by a doctor or nurse to leave the room, Sue was never to be left alone. Negativity and crying were not allowed in her room; if you wanted to cry, that was fine, but do it in the waiting room. Do not wear black-colored clothing in her room as this signifies death, instead wear bright or colorful shirts, or better yet your Team Sue shirt.
After 3 days in the ICU, doctors told us to say our final goodbyes as Sue was given less than a 5% chance of survival. At approximately 7:00 PM, Jay told Sue about the infection that was ravaging her body and let her know that if she didn't want to fight any more she just needed to let him know. Sue shot Jay a dirty look that said loud and clear she wasn't ready to give up. A few minutes later our prayers for a "miracle of miracles" arrived in the form of an intravenous immunoglobulins (IVIG) treatment. Sue was administered the IVIG treatment Tuesday evening and by Wednesday morning her platelet count had significantly increased and other key blood components showed signs of stabilizing.
Over the next 10 days, Sue's condition gradually improved, but it became readily apparent that she would require bilateral below-elbow and bilateral below-knee amputations...Sue would be a quadruple amputee! Following her amputations in September 2014, Sue was admitted to the Jim Thorpe Rehabilitation Center Southwest Complex to begin the grueling recovery process. She spent 30 days at Jim Thorpe where her therapists did a phenomenal job re-teaching her how to do the most basic tasks and strengthening her body for the next step in her recovery, the long and arduous process of prosthetic legs and arms.
In mid-November, Sue and Jay headed to the Center for Intrepid in San Antonio TX for physical therapy, occupational therapy and prosthetics. A dedicated and awesome group of professionals helped jump start Sue's recovery. On December 10, 2014, less than 3 months after her amputations, Sue walked for the first time on her prosthetic legs! Sue and Jay returned home for the Christmas break and quickly realized that home is where they needed to be. While this was initially a major setback, it soon became obvious there was a different plan in store for us.
In the middle of January 2015, Sue and Jay met with Hanger Clinic to discuss prosthetic care options. Sue started lower extremity prosthetics with Hanger in early February and by May she was walking over a mile around our neighborhood. While Sue has regained her mobility with her prosthetic legs, the upper extremity process would prove significantly more difficult. She completed occupational therapy at Jim Thorpe Northwest Rehabilitation Center in March 2016 and now uses her myoelectric hands as needed for specific tasks. The determination Sue has shown in beating septic shock and learning to walk again has proven that no obstacle is too big to overcome!
It's been over 3 years since we said our final goodbyes on that surreal day of August 12, 2014, and Sue has proven that anything is possible. She went skydiving on August 29, 2015, fulfilling one of her bucket list items and walked 5K on her prosthetic legs in the inaugural Sue Stull Sepsis 5K Fun Run/Walk on September 12, 2015. Simply put, my wife is the most amazing person I know, my best friend and my Super Hero!
Oh yeah, about that Ernest Hemingway quote. Sue's hands and feet died in that ICU room, but her spirit and determination to live life and help others is as strong as ever!
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