Journal the Journey

Joseph took Dad to the hospital on 12/14 because Dad’s medication for pulling fluid off his lungs (due to heart failure) was losing its effectiveness. He was having trouble swallowing soft foods and his breathing was labored. He was hardly sleeping. I hugged him tightly after Joseph helped him into the car and hot tears rolled down my cheeks as I simultaneously told Dad I’d see him soon while praying that would be true.

Tests that night showed Dad’s heart function was 25-30%, down from 40% a year prior. He was admitted for “heart failure exacerbation” but the doctor said this was a normal decline at 91 years old and he’d seen patients live a long time at 25% function. He did not think Dad was imminently near the end. The plan was to change the one medication, monitor him a couple days, then send him home.

A few days later – on 12/18 – Joseph and I were awakened by a phone call by a different doctor at 5:00 a.m. letting us know that Dad had nearly died and was moved to the ICU. I entered total shock, as Dad had been stable and the plan was to bring him home that day or the next.

We’d just talked to Dad six hours before that call and he expressed concern that they weren’t giving him the proper medications. He said he wanted to come home and he wanted Joseph (“Joe,” as Dad called him) to be the one giving him the medications. I asked to speak to his nurse, and she read me the medications she’d given him that evening. Nothing sounded out of the ordinary to Joseph and me, so I assured Dad the medications were correct and he’d be coming home soon. It bothered me to hear him so worried, but we had every reason to believe everything really was okay.

As I snapped out of my memories of that recent phone call with Dad and his nurse, the doctor on the 5 a.m. call was saying they think Dad choked. I disagreed, because Dad knew something wasn’t right with the medications when we spoke hours before. I asked the doctor what medications they had given him the entire day before. Anger rose in me as I heard the words “carvedilol” and “entresto” come out of the doctor’s mouth, as well as a third heart medication… all at maximum doses.

Joseph had been in charge of Dad’s medications for the last two years, and he’d worked hard to advocate for Dad at every doctor visit to get the right mix of medications and doses that would stop ruining his quality of life with their awful side effects. One example of this was when we realized a year or more prior that entresto and carvedilol combined were bottoming out Dad’s blood pressure, causing confusion, dizziness, and blackout spells every day between breakfast and lunch. Long story short, it was finally agreed upon by Dad’s doctors that his body cannot handle both entresto and carvedilol, even when both given in low doses. They switched him to just one of them at the lowest dose and the confusion, dizziness, and blackout spells all disappeared. His quality of life increased dramatically.

I shared this news with the doctor, and he said that it’s “standard procedure” to give a patient in heart failure all three of those medications. He doubled down in his theory that Dad had choked.

I got up, woke up my daughters for school, packed my bag, then headed to the VA Hospital to be with Dad. The 25-minute drive there was riddled with waves of raw prayers and a flood of tears that threatened to blind me from seeing the road. I parked downtown, then wept loud and hard. I kept trying to pep-talk myself into toughening up, because I knew I could not go into the hospital like that. “Be strong for him, Desiree!”

I calmed down for a moment, only for the next wave of grief to come crashing over me. The wailing just would not cease as I felt the profound pain of the real-time shattering of my heart. This went on for at least half an hour.

I looked to my right at my prayer journal in the passenger seat that I had brought in preparation for an entire day sitting in the ICU. I took some deep breaths, opened it to the next blank page, and put pen to paper.

God steadied me with His peace and strength as I wrote down this prayer. My eyes swollen and burning from all the tears, I got out of my car and made my way to the ICU unit. I did not feel ready for what I was about to see, but I knew I wasn’t alone. I knew God was with me… and I knew He was with Dad too.