Sunday, April 01, 2018

Remembering 4/1/2013 on 4/1/2018

I haven't been to Prophet or Madman since June of last year. Since then, I've done most of my posting at Bookended by Cats or directly on Twitter. But an anniversary like this moves me to reflect. Five years ago today, April 1 was on a Monday. Easter Monday. It was also my 19th and final day at the Cleveland Clinic with my folks. I would leave on Tuesday (4/2) and return to work on Wednesday (4/3). Dad was stabilized, the doctors were no longer looking for a proverbial silver bullet, and there was a plan to move Dad from the ICU to a Clinic rehab unit and then ultimately to a care facility closer to home. At the time, this felt like a good outcome. It felt like progress. As I look back upon this event with the ... benefit(?) ... of hindsight, knowing what was to come in just over a month, it might be easy to take a darker view of this memory. It can be tempting to connect the news received on that day with the supposed nature of the calendar date itself. So, yes, the irony of receiving hopeful, yet ultimately false, news on April Fools’ Day is not lost on me. But no one, whether in the Clinic or beyond it, was conspiring to deceive us on that day. There was no endgame or "gotcha" moment in mind. Everyone involved was dealing with the best information they had at that time, and there was cause to be hopeful. There was a very real possibility that Dad would make at least some kind of recovery. In the wake of what happened, was that false hope? No. What came later cannot mar the hopefulness and slight relief I felt on this day five years ago. Even though I'm still saying ... #GoodbyeDad. (If you want to read my 4/1/2013 FB post that sparked this reflection, the full text is posted after the jump.)
April 1, 2013
Cleveland Clinic update (Day 19): I have not posted a detailed update since Monday, 3/25. Not sure if that was due to my resistance to share anything in the recent Wednesday-to-Friday window, or if I was simply exhausted. We had a bad, or at least what was perceived to be a bad, couple of days. But what a difference a few days (and some doctors with better bedside manners) make.
You see, the main doctors in medical ICU are respiratory specialists and they have been consulting with neurologists on Dad's case. The medical ICU's respiratory specialist of the week may have been more blunt or dire in regard to the prospect of neuromuscular issues a few days ago. And when I say "specialist of the week," you have to understand that the Cleveland Clinic is a teaching hospital, so attending physicians and specialists are rotated on a weekly (or is it every other week?) basis. Of course, the respiratory specialist also said we should have the neurologist explain things because it wasn't his area of expertise. In retrospect, he probably should have led with that.
Anyway …
The neuro team decided to do two MRIs (brain and lumbar region) and a muscle biopsy. One of the resident neurologists -- whom we had seen before and decided was very nice -- came to us with her current boss (per the rotation I mentioned). They did a very nice job of explaining things, particularly what they were looking for. We gave consent for the procedures. The point was to determine if there is a signal problem (i.e., neurological problem, which could be revealed by MRI), and/or something affecting muscle tissue (hence the biopsy).
The good news in the MRIs is that they do not reveal any neuromuscular degeneration. Early results on the muscle biopsy also reveal no red flags. More results from the biopsy won't come for about a week.
Looks like we are, for the moment, no longer looking for a big disease or trigger for this episode. Rather, the fluid buildup in Dad's lung and below his diaphragm are believed to be the culprits in his weakened condition and breathing issues. Also, being bed-ridden for a few weeks have contributed to his becoming weaker. That latter condition can be corrected with physical therapy.
We think we have a handle on why the fluid accumulates in his body as this is the third time it has occurred. There might be something of a threshold at work as this is the worst he has been affected by the fluid. The focus now is two-fold: reduce the fluid (through meds) and ween him off the ventilator. He is being worked during the day, and then given full ventilator support at night. At this point, he has nearly approached half support during the day. This means he is making progress. It's slow, but it's progress.
After we consult with the doctors tomorrow, I think Mom and I will be leaving the Clinic on Tuesday. Mom will return later in the week, but I'll be back in the office on Wednesday. Dad is pretty much stabilized, no longer requiring critical care, and he just needs to work on rebuilding his strength, particularly in his breathing capacity. He will probably be moved from ICU to a breathing rehab floor (I think we are waiting on space for that). And, depending on his progress, we will be able to move him out of the Clinic and to a nursing care center closer to his home to complete his rehab and then get him home again.
My thanks to everyone who has expressed concern and support, and to all who have contributed their thoughts, vibes, mojo, and prayers.

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