Thursday, October 29, 2015

Neuro Critical Care

As hard as this post was to write (and possibly to read), I want to remember the details of this day forever. Last Thursday, Brad and I flew to Salt Lake City to visit his stepdad. He is flying back up there today. Greg is hanging in there, but his condition is still precarious.

We left Sky Harbor airport on a sunrise flight to Salt Lake City. The flight was smooth, the landing unremarkable.

We rented a car at the Salt Lake City airport, a teeny blue rattle trap that couldn't accelerate past 60 mph without shaking and threatening to crack in two like an eggshell.

Our flight and drive were punctuated with small talk. Quick calls to the office from Brad and quick calls home from me. Trips to Utah in the fall usually land on my top ten list for the year--the colors changing on the mountains, the crisp kiss in the air, the sweaters and boots I pull out of Arizona storage to wear--but this trip was not one for pleasure. There was only one destination on our itinerary. IHC hospital at 53rd South.

Two days before, Greg had woken up, able to recognize his children and to participate in conversations. He gave hugs and interacted. We didn't know what to expect when we arrived, but I was secretly hoping for a hug and a conversation of my own.

Life in the Neuro ICU is not like that. You can't dictate expectations and have doctors take your orders.

When we arrived, Greg was agitated. Brad's mom, a sister, and a brother were bedside, hopeless witnesses to a scene that would play out numerous times that day (and the days before, and the days since). He writhed in pain and complained about the pressure in his head. He would open his eyes briefly, not focusing and not seeing, then he would close them again, lying back on the bed exhausted from the pain and the fight. Occasionally, he would see through the painful haze. In those moments of clarity, his kindness would come through. "Hi, Jenny. Aren't you glad you're here? I'm sorry you have to be here."

And that would be it, until the pain and pressure would once again take him to a place he couldn't escape.
Brain injuries of this type preclude the continual use of sedatives because the brain cannot heal itself from a drug-induced state. The only option is to mange the pain as best they can while tests are performed to determine cause and treatment. Greg's case is unusual, because the doctors are operating on a diagnosis of aneurysm without being able to find one. An ultrasound of his brain that day showed a starfish-shaped cloud of blood and a place near the top of his cerebrum where a stroke had indeed occurred. This spot in the brain affects short-term memory and has left him with a subtle droop of his left eye. Doctors needed to place a drain in the front of his head, and he may be the only 69-year-old man who needed his head shaved to insert it in the right spot. This drain leads from his forehead, between the two hemispheres of his brain, down to his brain stem where bloody spinal fluid is pulled continuously into a bag at his side. The fluid should be clearer each day, but it remains bright red, daring the doctors to find the source.
I have never been witness to untreatable pain on this level. He would moan and twist in bed, begging for the pain and pressure to stop. He would ask for scissors so he could remove IVs, monitors, and circulation cuffs, picking absentmindedly at them. His inherent modesty clouded by medicine, pain, and the effects of the stroke, he pulled at his hospital gown and kicked off sheets and blankets, unaware of what he exposed. Occasionally, lucidity crept back in, and he would ask for Tums to relieve his chronic acid reflux or to swallow shards of glass because that would be preferable to the misery he was enduring.

As a possible reprieve for the pain, Greg was given an IV dose of oxycodone in conjunction with his two sons giving him a priesthood blessing (click here for information about priesthood blessings). The content of that blessing will remain a sacred memory for me, a blessing promising courage, faith, strength, and needed rest from the pain. The power of the blessing together with the oxycodone allowed him to rest for more than four hours that day.

After completing a barium test, the doctors concluded that he is aspirating everything administered orally, and the decision was made to place a nasal feeding tube. Before all of the family left his room for the nurses to drop the tube, Janie warned the doctors and nurses that Greg has an intense gag reflex and would fight the placement. This concerned the doctors, because any agitation raises his already scary blood pressure. Thirty minutes later we were allowed back in the room. No feeding tube and a bloody nose told the story we mercifully were prohibited from seeing.
I don't know what was harder--watching Greg muscle through the intense agony or watching his family watch him. The siblings would gather around his bed, taking turns calming his fears, tucking his blankets, holding his hand, looking into his face--hoping for a glimmer of who is in there. Janie would rub his feet or hold his hand or adjust his bedclothes, bearing the stress and the sadness with remarkable strength and as much positivity as she can. Tears would prick their eyes and sobs occasionally escaped their mournful countenances. Quiet conversations took place around the room, all tinged with worry and fear of the future. Where are his passwords? Who has his estate plan? When can Brad come up again? What about a living will? Will the memory loss be permanent? Who can mow the lawn this week?

I took turns at each station in the room: the comfy chair, the lean-you-backwards chair, the buck-you-forward chair, staring out the window at the mountains, and at his bedside. I held his hand and answered his repeated "Can you untie me?" with a compassionate untruth, "Sure, Greg." I knew the same question would be raised almost before I finished my lie. I searched his face for even a flash of familiarity, a moment of connection. His blue eyes would fly open when the pain or discomfort would grow, but his gaze always went through me--past me to somewhere or someone or something else. "Love you, Greg. Goodbye." The words choked in my throat.

The day simultaneously dragged and flew by, and then it was time for us to fly home. Somber and full of questions, Brad and I drove back to the airport, this time barely acknowledging the questionable car's handling.
I slept for most of the 90-minute flight home, and when the captain announced our descent into Phoenix, I looked out on the Valley of the Sun, cloaked in darkness and dotted with humanity's light. I was back to my responsibilities--motherhood, family, church, community.

And yet a big part of my heart remained bedside, not knowing what the future holds and not knowing if my goodbye would be forever.


  1. I'm so sorry, Jen. So sad and sorry. 😕

  2. What a difficult time. We are all just holding our breath in silent prayer for him and all of you.

  3. Jenny~
    I am praying for you and your family!