The Unexpected Present

There’s a Risk In the Care Continuum

two brown trees

Twenty years ago I recall a long hot summer August in Silver Spring, Maryland that especially affected trees growing on droughty soils. Living on a cul-de-sac tucked away in Sligo Creek Park, it wasn’t unusual to hear a loud dry crack followed by the crash of a dead tree or equally heavy limb. Its resounding thump onto the ground would bring about an eerie quiet. Another victim of heat exhaustion.

One Friday on my way home from the transit bus drop off, I slow-walk the pavement keeping an eye out for the kingfishers that had come back making nests and raising their young along Sligo Creek. The streets are tree-lined with sycamores since the abundant white oak that named a section of Silver Spring sprawl disappeared. Young trees amid the older ones whose roots upend sidewalks. I hear of many twisted ankles and fractured bones caused by a misstep off a curb or tripping on exposed roots. So I’m carefully watching my step as I wait for a car to drive by before I cross the street. It’s only a moment. I hear it. CRACK.

An unmistakable sound. I did not freeze and without hesitation, I take a step forward looking straight ahead. CRASH. A rather large limb smashed onto the pavement just behind me. Its protruding leafy branches scratch my neck and shoulders. I couldn’t move to assess what just happened. Had I looked up I would not have had that split second in mind to move one step forward. There is an eerie quiet as the car driving by stops. The driver breaks the uneasy silence punctuated only by cicadas as he leans over and asks, “Are you all right?” “I am. Think so.” Starting to shake, he calls out “You should go get a drink. You’re lucky. Buy a lottery ticket.”

I see how lucky Yuri and I are having gone through where no man has gone before. At least not in our lives. Doctors were telling us we are risking medical setbacks by taking him out of hospital depriving him of more observation and biopsy procedures, not appealing for additional time in the rehab center as well as our loathing for the extensive imposition of prescription drugs. While I always present the options to Yuri, I instinctively know his responses will be “Get me out of here” and “When will I be home.” More recently it’s “Do I have to take this?” and “Not another doctor appointment.”

Honestly, the first two weeks were a steep learning curve– physically and mentally challenging. Following the gazillion directions for administering medications, timeliness, the amount, and in what way to intake (feeding tube as well as swallowing)– proper ingestion and absorption often outweigh the risk from these High-Alert Medications. There are reasons to fear that some of these most likely can cause significant harm to the patient even when used as intended. The question remains– do the benefits outweigh the risk?

Now that Yuri has more strength and mobility, I’ve been concentrating on the follow-up phase of his recovery. We’re taking care of the Voice with an excellent Speech Therapist and got back from a recent six week follow up with our primary care physician, who we are extremely happy with because she listens to us and comes up with ways to allay my fears of forever maintenance medications because Yuri had been consigned into a category of chronic illness by a specialist.

Fortunately, our PCP sensed our trepidation. The last time she saw Yuri (first time as a patient in person) he was brought in a wheelchair. This time, while he is still using a cane, mainly for balance on uneven surfaces, but he’s doing so without looking at the ground. She remarked how good he looks. Recent doctor appointments similarly marvel at the speed of his physical recovery and consistent medical improvement. The medications are working. It’s not time to be taken off completely. Our doctor instinctively drew a parallel and encouraged patience with Yuri’s positive health improvements. “If it were my husband, I would continue with these meds.” Done. However, it’s still a task to create a positive caregiving process.

We’re taking the right steps for redesigning the Care Processes. First, finding the right doctor(s) that looks to partner with the patient and family. After the first responses in a critical situation, going to someone who is not a good fit with our health outlook just doesn’t work for anyone except the insurance company. Second, maximize communications within and across the Care Continuum. It’s a constant updating and sending most recent tests to the physicians who then have at their fingertips information crucial for making proper assessments and treatment.

Having gone through the scenarios and consent forms with clauses stating that there’s always a risk involved would often make my own heart skip a beat, or beat uncontrollably fast in an adrenalin rush as I put my John Hancock on the dotted line. I must apologize for the overboard reactions I sometimes take when confronted with a medical authority who doesn’t always explain the reason for it. Usually, there’s no time. Must be PTSD. Getting better as I grasp at the magnitude of the gravity of the situation that Yuri endured and his triumphs in coming back from the many risky procedures that had to be taken. There’s always going to be a risk when least expected. Listen for the crack and take that step.

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