The Unexpected Present

Who’s On First? What’s On Second?

Abbot and Costello

I Don’t Know, Third Base. On the seventh day in the hospital, Yuri was breathing hard and moved to the ICU where we were told he has to be intubated. I already knew the answer, Yuri said flat out, No. It would mean the end of the line for him, the doctor later tells me over the phone late at night, because he wouldn’t be able to keep up the fast breaths he was taking. He won’t make it through the night. It’s a decision of should I stay or should I go now.

It’s Day Three in the ICU, Yuri is hanging on and I find out more about this damn Wegner’s disease that the medical professionals renamed to something unpronounceable title shortened to GPA which anyone’s guess might include Grade Point Average. Apparently, Wegner was a Nazi but that would make it a perfect name for this horrible disease. It’s evil and destructive. And what I learned today, is not as rare as it was made out to be when it accosted him last year.

The team at Morristown Medical Center is top-notch. They know what they are doing, using methods that worked in the past as well as new technology considered experimental yet showing promise in alleviating the constant assault of antibodies on Yuri’s vital organs. I know he is in good hands, the approach is positive and if he can tolerate the powerful drugs that are being pumped into his body, the doctors think he has a chance. But the treatment that was finally given to him on Friday won’t take effect for another 7-10 days. An eternity. Why did they wait?? Many reasons – hospital policy, assessment, blood tests, bad timing, no central information about this for other health practitioners to know about available treatments, “we’re doing our very best.” Heard them all and it eventually turns into “it’s in God’s hands.” “Medicine is not perfect.” I don’t want perfect, I want a better system instead of take a number, sit and wait in the ER limbo.

It’s a treatable disease, they tell me. Then why didn’t Yuri get treatment when we first sensed that something is wrong in a low-key, creepy unassuming way until it attacks and bombards an already traumatized system? I’m still reeling at the speed this gripped his ability to take normal breaths. How it surprised the doctors and nurses looking after him. Why wasn’t he on maintenance treatment? they ask. There is such a thing? Like most everything in the hospital/healthcare system, we find out after the fact. Shouldn’t there be an express lane at the ER for patients who have gone through such illnesses, having been diagnosed and treated successfully? Why the wait? I want to scream at the top of my lungs. Why did they wait?? Why the missed opportunity of following up on a patient who went through such a devastating illness?

That Sunday night, I spoke with Yuri who just wants to get back to performing again, playing his music, singing three-part harmonies, and coordinating his next collection of tunes from his original basement tapes. He made lists for the next CD he’s working on. His violin playing was getting stronger, getting his chops back. I tell him we will fix anything that happens due to the illness and treatments. He has so much to do. Finally, Yuri says okay to the intubation.

This week is Nurses’ Week and I love the nurses looking after Yuri. They keep him comfortable and let me know everything that they do especially the level of medications being dispensed that fights the Wegner disease invasion. It is a war, but I only wish there was better coordination among the medical teams and specialists to prevent what we know is happening.

Now all I can do is hold his hand and watch the numbers on the machines, the drips through the infusions, the exhale of the ventilator, and the soft whirr of plasma exchange. A symphony that haunts me from the past experience of an unknown known, and now back again in the unexpected present. I say “I’ll see you when you wake up.” Sweet dreams and hallucinations.

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