The Unexpected Present

Epic Tale of Benefit Outweighs the Risk

ride of valkaryies

After the first Round 1 of Yuri vs The Monster (aka the Crusher 2021), I put in all information about his First Encounter (Newton Hospital), Return to the ER (Bon Secours) Flight With the Valkyries to Valhalla, New York (Westchester Medical Center) Bill Evans Club Night (Kessler Institute of Rehabilitation) Home Care (Atlantic Health Systems) ENT Extraordinaire Dr. Woo (Musician’s Savior) Mount Sinai Hospital. It hasn’t been updated since the date of his discharge, June 2021. Ergo, every time I ask a question, a nurse or doctor suggests I go to MyChart, They duck my questions about their conservative timeline with an extended prognosis into weeks and months in the foreseeable future. Like right now. I question their motives. So, I check it out. In my opinion, it’s terrible.

Looking for the article about the hospital/medical industry getting into an online mess. They are being pushed to do everything electronically and must be compatible with every format. Step in a basement startup turned into Epic, the electronic health records system for hospitals and large practices including MyChart (Atlantic Health Systems). It touts features such as medical templates, patient history, and referrals so that healthcare providers can deliver the best patient care. Nice theory, but not in practice.

The website homepage is very appropriate and likely a template for the website themes. Very generic and when you get past the bells and whistle about how great they are I start getting frustrated. There are no updates. There’s no way for me to access the information. The five-page Review of My Daily Plan of Care. Oh boy, absolutely nonsensical information with a veneer of what is Yuri’s “Plan of Care.” There is none. It’s all off the cuff. You can schedule all you want but when the numbers coming back from the lab reports aren’t in sync with procedures, it’s a big risk.

Benefits Outweigh the Risk –not so attractive. According to NIH: “The point is that focusing solely on a benefit without considering the downsides can be deceptive, even dangerous. How do you weigh the benefits and the side effects? How important are the outcomes to you? It might feel that it’s well worth giving the drug a try. The question remains whether it helps or whether it bothers you.”A lot bothered me over the holiday weekend.

Three weeks in ICU, Yuri was cared for with fervor. The pace was a quick entrance and exit unless there is a really crazy number bleeping on the machines attached to him, but he was carefully turned hourly (a quarter turn for wines) to alleviate the pressures that could cause wounds. After three days in the unit, he’s transferred to relinquish the intensive care he got. Then it’s the weekend. Tuesday there is hell to pay. Wednesday is Wound Day (I couldn’t believe the audacity of this nickname). Thank goodness Thursday was Throwback Thursday and I on my got to listen to music from 1972, Steely Dan, Ziggy Stardust and the Spider from Mars, Loggins and Messina (Caribbean-flavored “Vahevala” (or “Vahevella” or “Vaheevella”), Eagles, Witchy Woman. Need I say more?

Friday started off my conferences with the Attending Physician and Liaison of Morristown Medical Center about Yuri’s impending discharge. It is our wish rather than follow their rationale for recommending acute rehabilitation. We decline noting this benefit does not outweigh the risk. Yuri wants to come home and that’s what we’re going to do with help from Atlantic Health Systems Home Care which got Yuri back on his feet. But this morning there was no need for help, Yuri is doing it on his own.

The past 72 hours are a whirlwind. Friday became almost discharge sine Yuri was seen by hematology, respiratory therapist, physical therapist (he walked the hall and back), nutritionist, dietician, nephrologist, and ENT downsizing the tach tube. People may not realize it but all these things are a very big deal. Yuri is quite aware of what happens if you don’t have someone in your corner. Very easy to fall into a crevasse of the “system.” I won’t let that happen. Yuri and I agree that he should come home rather than whatever time they say it should be. I promised he would become for his birthday, June 16th. My neighbor understanding the situation through our numerous conversations doubts it can happen. I gauge her assessment. She, like others, doesn’t know Yuri. I do.

He is astounding the doctors, specialists, nurse practitioners, etc. who come through the day. It’s remarkable but not unusual for Yuri because he was not sick. Our decision to live a healthier lifestyle fortified his ability to withstand this devastating autoimmune attack on his own vital organs. Doctors comment on his resilience, and his ability to come back so quickly. The aide comes in to extract a tube. The ENT doctor stops by to change the size of Yuri’s trach tube. He sounds better. This R/T (Respiratory Therapist) has been around for a while and we have lightly bonded.

Otherwise, there is very little connection, Doctors and patients? Anybody? The Attending Physician stops by and offers support but not much else that is now affecting Yuri’s comeback from an event that might have been avoided. Who can say? He offers nothing. So sorry he is going through this, but there is nothing he can do. Save it for a rainy day. We have bigger fish to fry. Yuri is motivated and I might say a bit feisty. It’s so frustrating and often demeaning to ask for something very simple that he cannot do by himself. It is very humbling. He does it with the decorum that comes from his upbringing and Ukrainian immigrant family Szilkewicz-Turchyn.

There are some very kind people attending to Yuri throughout the day, However, I find the night people have more time to chat about him other than in medical terms. It’s refreshing to call at 11:30 in the evening before going to bed and hearing a bit about his evenings. It won’t be long before the promise will be fulfilled. Yuri’s will and determination set many courses for himself and this one will be no different. He is adamant about getting to the point of getting him home.

I’m very grateful to Yura for his wise and very personal counsel that had a profound impact on a very dark time. We are so grateful for the emails, notes, texts, calls, and messages from our friends and family who give us such wonderful support. There is much to do, places to go, and people to see. We take risks, but sometimes the benefit doesn’t always outweigh the risks. Will keep a lookout.

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