On March 5, 2025, Lynn entered a local specialty hospital to continue his medical recovery and (liberate from) come off a ventilator. The improvement in his cardiac and respiratory failure made him ineligible to remain in the intensive care unit. Unfortunately, the hospital where he was a patient did not accept patients with ventilators into their step-down unit. As a result, the case manager informed us Lynn would have to transfer to a specialty hospital that could complete his recovery. She brought a list of several choices, but most were miles away from Richmond and did not allow me to stay with him. Deciding who I could trust was terrifying for me.
Staying Meant Safety
For us, my ability to stay with Lynn was a safety issue. On more than one admission to the hospital, I had prevented serious harm from coming to him by being present. It was vital for the admission to the specialty hospital because Lynn could not defend himself physically or verbally at this point in his recovery. With typical admissions, his quadriplegia made him high risk because his hands could not press the call bell. Unfortunately, the positioning of the specialized call bell for patients who could not use their hands was often not within reach for his use. However, if I was out of the room and something happened, he could still yell for help as a last resort. However, this time was different. He had a tracheostomy. Air must pass by the vocal cords to hear sound. With a tracheostomy, the vocal cords are higher up, preventing air from passing by and making sound. The person cannot speak. Therefore, if the placement of Lynn’s head call bell was not precisely correct (a frequent occurrence), he had no means of calling for help.
I received notification that the facility approved my request to stay with Lynn, along with the expectation that I decide to transfer him to the new location within the next hour. I was not aware he was that close to being ready to leave the ICU. The idea of leaving the safety of the ICU, plus going to a place I knew nothing about, scared me to death. I had no support system to ask if I was making the right decision, no one there whom I knew I could trust, and I knew nothing about the place’s reputation.
Withholding Information
To make matters worse, I was holding information back from Lynn. He was not aware that two surgeons had informed me after his cardioversion earlier that admission that he needed either a heart transplant or mitral valve replacement. I knew, and they confirmed he was not a candidate for either. Although I was unclear about the medical team’s prognosis regarding his life’s longevity, his doctors assured me they expected him to make it home. However, I did not expect him to live longer than one year based on what research I could find about “inoperable mitral valves.” I decided not to tell Lynn he needed a heart transplant because why tell him something he could do nothing about that might cause him to give up the will to live? He needed hope and a reason to push forward, not a reason to give up.
All the “everybodies” who were “anybody” assured me that the specialty hospital where we were going was safe and had a good reputation. Therefore, I agreed to the transfer even though my gut kept telling me, “NO!” I cried with grief and trepidation as I packed our belongings, and foreboding washed over me as I drove out of VCU’s parking garage.
When I arrived at the new facility, I walked through the front door with my wagon-load of luggage without being stopped. I found the elevator and emerged, looking for directions to Lynn’s room. Unsure where to go, I mistakenly took the long way around, passing in front of most of the other patient rooms. No one stopped me to ask who I was or where I was going, which I found very concerning for patient safety since it was after visiting hours when I arrived.
I finally approached his nursing area, and someone spotted me. They looked up and asked if I was looking for room 426. I said, “Yes.” They pointed to it and continued with their work.
I’m Living My Worst Nightmare
Upon entering Lynn’s room, my heart sank. I think I said out loud. “I’m living my worst nightmare.”
Readers, we did, indeed, live our worst nightmare from March 5 through April 9, 2024, when he died at that facility. Living through those weeks led me to vow to add a section to my website about advocacy and reporting adverse patient care outcomes to Healthcare to Homecare. I met several families at both hospitals who told me stories of hardships they encountered and how helpless they felt when harm occurred because they didn’t know how to stop what was happening.
I realized as I dealt with the trauma I experienced watching my husband die due to incompetent care, I needed to add another resource for caregivers to my website. I know who to contact when I encounter a problem with patient care and what to do if I don’t receive satisfaction at that level. If someone is about to do something harmful, and that person has a supervisor, I know what usually works to stop them. If harm has already occurred and you want to make sure it doesn’t happen again or the person is held accountable, I know how to do that, too.
Soon, you will know how to take these actions, too. I’ll see to it in future posts of Healthcare to Homecare.
