Good writing, with a strong point and with life oozing out.

On Letting Go

June 29, 2006

We resolved last night to make it to rounds this morning. Partly because it’s pretty dang cool to see twenty to twenty-five really smart specialists bringing all of their attention to bear on our very favorite, and partly because we realized that big decisions about discharge and Will’s status and his consultation with various specialists was being discussed and decided today. Though we harbored more than a few misgivings, we weren’t going to fight anything or make any fuss; we just wanted to see what was up, straight from the source.

Rounds happen right about 9:30 in the morning, which meant that we needed to put on the press this morning to feed the girl, get cleaned up, and head out the door. So a very short night was ended with an early alarm and the sound of feet hitting the floor. We got out of the door in good time, and hit the road on the first sunny day in what seems like a week.

By the time we got off Route 50, the roads were exhibiting the early signs of congestion: slight decrease in speed, the bunching of cars, an almost imperceptible delay at exits. Halfway down 27 we saw that our fate was sealed: we had to stop-and-start for about a mile before we even got to 395. Where we sat, The Girl asleep, The Wife quietly lounging and The Dad stewing. I kept glancing at the clock, wondering if we might find some miraculous opening and still squeak by to make it in time. But by Crystal City, I knew there was no way to make it. We agreed that our goose was cooked, I mouthed some words of apology and acceptance, and the wife leaned back to snooze.

In the silence, I plotted and fumed. I fantasized about writing a delicious diatribe of sedition and rapier wit disguised as a Patient Feedback Sheet. In it, I would expose the many shortcomings of the so-called care we’ve received in the last week: the delayed feeds, the nursing blunders, the oversights and bobbles, and the persistent defensiveness of the chirpy Nurse Practitioner. How on Thursday, we’d been told that we were there to gain weight and prepare for going home, and how on Friday morning we heard that we would be trundled off-campus to ‘long-term care’. I’d describe how we were instructed about the utmost importance of feeding, and then subsequently sequestered from access to our own breast milk, and forced to initiate and cajole nearly every feed over the course of our stay on the floor. About how, with all of the accumulated delays in delivery of food, our boy was missing at least one feed in every 24 hours.

And then I realized that I would be fighting against my own best interests. If I wasn’t happy there, and they wanted us to go somewhere else, why complain? Why was I grabbing for control? I wouldn’t write the letter.

Then I imagined that I’d offer snarky rejoinders on my way out the door. I’d smile on the outside, but I thrust out some sharp sarcasm to let people know how smart I am, and how they had failed me. By New York Avenue I had rehearsed a few of the best lines for the most deserving suspects.

But then I remembered that we’ll be back working with these same staff members in few short months for Will’s second and third heart surgeries (plus any additional ones that might come up). Why make enemies? More importantly, why manipulate people? And why fight what was looking more and more like a foregone conclusion. I wouldn’t say anything (well, not too much).

On the way up First Street, I considered following the lead of our genius and generous Pediatrician, who offered to throw his chips down on a power play designed to leverage our expertise and training and competence to allow us to find an exception to the usual protocol and be released directly home. We would join forces with him, and if we couldn’t win, we would at least make a valiant effort and go down in a blaze of glory.

And then I considered that, though no one loves our son more than us, we are not necessarily the best people to care for him. We could try to take him home, but that wouldn’t be the best thing for him. Our desire for control was more than a monster; it had the potential to work against the best interests of our son.

I felt empty and relieved by the time we got to Michgan Avenue and found a nice spot in the parking garage. I calmly set to unloading the car and loading the stroller. During which time I stood up, banging my head on a giant sewer pipe. Not a seeing stars collision, but a gentle thump. Which was just enough to crystallize my pent-up frustration and offer a catharsis, putting an exclamation point on my release of control. In the tears and sobs that followed, I got a big, warm hug from The Wife, who knew she didn’t need to say anything. She just understood.

With my new disposition, I barely even batted an eye when we waved to the friendly dreadlocked security officer (who we’ve greeted nearly every day for the past fifty) and one of his associates shouted us down to compel us to produce an ID and ‘sign the log!’. We waited forever for an elevator before we arrived at the floor, where we were shocked to walk around the corner to see everyone just finishing up rounds on our son.

“We’re moving him today,” grinned The Chief and The Chipper NP.

“Oh, that’s fine,” we said, and we meant it.

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2 Responses to “On Letting Go”

  1. Liz says:

    Mike,

    Having been in your position, I really don’t envy you. It is so difficult to act as the patient advocate for someone you love so dearly. It is a difficult and emotional line to walk… because you spend so much time with and love “the patient” so much, there are just some things that you know and you need to make the professionals hear. Yet, because of their training, education, and experience there are some areas where you really need to relax your grip and just accept what the professionals say. It so hard to know when to do what. After six years, I still second guess myself… should I have been stronger and more persistent that day? Should I have been less assertive that other day? I will pray with all my heart that God gives you the strength and wisdom so that you know when to act and when to accept.

    Hugs and prayers,
    Liz

  2. Greta says:

    I am so touched to hear how you and Stacy are working together through this. While many couples would bicker and fight under such stress, you two seem to really be pulling together, empathizing with each other, and being wonderful parents together. You inspire me. Always have done.

    Sorry to hear that the hospital stay outside ICU has been such a battle. I hope the folks at HSC give better results.

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