Doctors commenting that Yuri’s progress is going in the right direction are not the ones overseeing his daily altered state of being. Constant monitoring and tweaking of medications illustrate the good days and not-so-good days. I learned this the hard way (again) to listen carefully to what is said. Sometimes the jargon is basically for the medical staff and can be misconstrued by family. Hence my emotional rollercoaster ride over the weekend.
When the Respiratory Therapist offered positive affirmation that Yuri’s “breathing on his own” exercises are doing well and she sees he is going to be coming off the vent soon. I am ecstatic. I breathe deeply and exhale, marveling at my own simple ability to “just breathe.” But that’s not what she meant– that he will be off the machine and breathing on his own. The next day, when I ask what time he will be extubated, the nurse chuckles to herself while adjusting his meds, there’s no way is he ready for that move. What am I missing?
Soon after, I get a call from a doctor asking for consent to put in a trach tube (again) and feeding tube (again). Been there. Done that. How did we get to this point after coming to the hospital’s ER a week earlier and telling them Yuri’s past medical history, where they could find the medical records with diagnoses and treatments (that worked!)? Contact info for the primary care physician that saw him upon his return home and throughout the year? Where’s the communication? Miscommunication. I tell the doctor no one spoke to me about consent and scheduling. I suggest we discuss other options. He recommends palliative care.
The ride home was strenuous and wearying as I stay focused on the drive, listening to our Toyota’s cracked catalytic converter grating noisily at every red light. I relive the picture of Yuri and everything that is happening to him in real-time as well as the repercussion of the autoimmune attack on his already trauma-stricken physical system. I can’t imagine what he’s thinking/feeling when he’s awake. Sometimes his brow furrows with questions, his eyes well up with emotion, and widen with acknowledgment of where we are in this bizarre life-altering state of being. We worked so hard on getting him back to playing performance level and he looked forward to it with verve and zeal. Not right now. (Again).
While the therapies seem to stem the tide of the devastation of this evil disease, Wegner’s vasculitis, Yuri’s kidney was hit hard followed by spontaneous bursts of bleeds in his lungs weakening his ability to just breathe. We’re in Act II with therapies necessary to heal the damage done as fast as a wildfire would do and maintain vigilance that nothing else will take root in the aftermath. It will take time to get him back. Necessary precautions to avoid infections are the focus and I have to agree with that having gone through those awful pitfalls (again). Another discussion about the Who’s Who coming in to see Yuri, specialists, surgeons, infectious disease, nutritionists, technicians, etc. helps me focus on what is important. He is.
Monday morning at 10 a.m. I meet with the Attending and his team at morning rounds. Yuri is awake and part of the discussion. It’s not easy for us. I have to make decisions that will put him through this torture again. I tell them we must discuss and decide. Not many options here so go with the plan. The rest of the day turns into scheduling and giving consent. Yuri’s heart decides to correlate with my own internal rollercoaster, and his Nurse is in and out tweaking the meds and staying in contact with the Cardio Doc who came in earlier stating (again) that he is not worried about the impromptu jolts, his heart is strong. Eventually, we calmly sit and wait. He’s awake despite the sedation they keep him on and mouthes “I Love You.” “I know.”
Later that evening, the Rheumatologist calls telling me he is in contact with his Vasculitis Mentor who agrees that Yuri should be on this new treatment developed especially for Wegner’s disease. It’s still considered extremely rare, but doctors are seeing more cases particularly here in Morristown. He is happy that I have one of Yuri’s closest friends (from college) on board to help me navigate through this unfortunate situation but it’s a part of life so many have experienced or are experiencing. While we can’t change the circumstances, we can make a reconnaissance plan of action. Observation and vigilance. It’s also great to have the support of friends taking the utmost care that I don’t contract Covid in situations that could easily become a risk if I become careless or a bit too complacent with the recent spike in cases.
Then the support can come from unexpected places. My neighbors have been keeping tabs on me daily, asking about Yuri, and how I’m doing. We sit on deck lakeside and I regale them with Yuri stories of our Jamaican vacay and his proposal, our adventures, and ultimate triumphs. They are already looking for another car for us as the Toyota is getting on in mileage taking the recent brunt of necessary road trips. They hear the groan of its cracked pipe as I turn into the circular drive and know when I’m home. I get a bit of ferret fun and love from their service dog, James, who needs a ramp to get up the stairs. Lots of animal love and Nell is always ready with purr-therapy. Tomorrow is another day. More consents. More critical care until we’ll see the improvement necessary for Yuri to be out and about again. Can’t wait. Staying positive. Keeping the faith. Grateful for all prayers and good wishes.
P.S. Yesterday was World Turtle Day. Slow and steady wins the race.
