I spent the past week battling a hospital care team intent on proving their proposals for Yuri’s next step is right and my knowledge of his capabilities is wrong. “Wishful thinking,” they say. “We have twenty years of experience, we know what can happen, he is not ready.” “Do what you want,” one said as she angrily storms out of his hospital room. Perhaps I have to guard against overconfidence, perhaps I was a bit delusional during the harrowing weeks in ICU, maybe, just maybe, my absolute trust in Yuri’s physical body to heal itself transferred into his brain during its time under sedation.
We began planning for discharge at the start of the week – skipping the acute rehab that the care team recommended and working on getting him home from the hospital by Friday. A tall order almost as daunting as the last time, but at this hospital, there are more individuals steadfast in their proposed systematic assessments, often unemotional and without compassion as to what it would mean for Yuri’s complete recovery. It would add weeks and months before he could get back to his playing prowess on a level he demands of himself.
Every day, he was assessed and each time one of them would chirp “he failed again” so I must consent to a “backup plan” that requires surgical intervention. I say “No.” The pressure is on. None of their rationale or cajoling sweet talk penetrates my resolve. We’ve been in this position before. Although we knew this was necessary, it was a very difficult time for us both. Getting through those insurmountable hurdles, we believe that the benefit outweighs the risk in coming home while Yuri is still physically recovering from the trauma of illness as well as treatment. However, there is nothing good about coming home with a medical attachment that interferes with typical daily life if you really don’t have to. It depends on a lot of things except that it’s never a one-size-fits-all protocol. Yuri is one-of-a-kind. Lesson learned.
I tell him before I can take him home, there are two things he must accomplish: walking and the ability to do five steps up the stairs to our front door, and swallow properly. Simple things, but not easy after almost three weeks on a ventilator and tethered to the IV stand and heart monitor. He takes the challenge seriously as they can develop into life-threatening situations (a fall or aspiration pneumonia). From the day of Yuri’s release from ICU getting him up and moving, the walking comes quickly with confidence. The swallowing part takes longer. With the help of many professionals who have years of experience working with individuals in similar situations keep my conviction focused on the course we decide to take. Discharge. Coming home.
On the way to Morristown, I must get onto Route 80 before accessing Route 287 with traffic at breakneck speed, and full concentration to maintain a position at the moment of exit into another commuter racetrack. A police vehicle turns into the left lane and moves right behind me. Instinctively, the hairs on the back of my neck stand up on end until he eventually moves over to the right lane and exits. Whew. The fight-or-flight adrenalin rush comes over me until I regain composure and address the situation calmly. It isn’t easy since I sometimes feel I’m going through a PTSD situation. It’s how I feel whenever someone enters Yuri’s room with an announcement that throws us for a loop. It happens on Friday when our preparation for Saturday’s discharge comes to a screeching halt.
It has nothing to do with Yuri’s abilities to walk and chew gum at the same time. He even ate lunch and dinner delighting most of the staff who he has charmed including the cleaning lady who hugged me with unharnessed joy. Nothing on our end. Yuri is scheduled for additional outpatient treatment next week and the finance office of this particular vendor has the approval letter sitting on someone’s desk. They are gone at 3:30 p.m. It’s Friday. It’s the Weekend. If we leave, it would be against the discharge doctor’s advice, the insurance won’t cover the treatment, Yuri would lose his scheduled place, he would have to be readmitted to the hospital when there’s an opening, and it would interrupt the current positive direction for recovery.
So, here we are this weekend, Yuri’s Place on Gagnon 3 Jazz Room 30. Disappointed, yet accepting the changes in medical treatment protocols where hospital units become offshoots of privatized vendors with profit sharing and business hours. While the current business practices make money, Yuri and I come from a different time and place– patients were assessed and treated as individuals, doctor-patient relationships were sacrosanct, hospitals were not understaffed on weekends, and Fridays were not an escape hatch for weekend warriors. I’m sure it’s not like that everywhere but our experience is that’s how it is and will be. So be it. Be safe. Be well. Stay healthy.
