Nature does not abide the straight line. Perfection in nature is rare and what it looks like can be surprising. Imperfections can be just as hard to recognize; often hidden by what we expect to see, what seems normal, they can be the most mundane of details. So while in a straight line we see consistency, constancy, the absence of error, a mathematical precision that suggests a kind of mastery to please the human mind by reassuring us and banishing fears, nature takes its own course, one where the route might be no less imperative, but a path without the arrogance to pass all things undisturbed.
When the housing market took off in the early 2000s, a friend laughed at me for putting what little money I had into a magazine, when—of course—any sane person would buy a house. And if they already had a house, they’d buy another. There can be little doubt it would have been a better use of my money but when my interest rate would have shot through the roof and I couldn’t afford to pay my mortgage—something I considered so distinct a possibility I refused a loan I was offered—as it turns out, I would have been able to keep my house because other tax payers would have been forced to rescue me from my bad judgement. It turns out that my responsible judgement was worse than everyone else’s bad judgement. Who knew? The point being that as he and other friends laughed at me for missing out on what everyone was saying was going to be a permanent escalation in real estate values for all time with prices gaining double digits annually until the sun burned up all its hydrogen. That whole linear function thingy.
Only it didn’t play out that way. But because so many people banked on exactly that impossible scenario (among other factors) our economy still hasn’t recovered.
The Deuce is now a corollary to that fundamental truth. Based on the confusing, incomplete and occasionally contradictory information we’re getting from the doctors, our son either hasn’t improved in a week or he’s worse. Or maybe something else entirely. We’re not sure. But my mind keeps going back to the dissatisfaction I experienced with the housing bubble because though I wasn’t rewarded for good judgement, I knew the market wouldn’t continue to go up, that the bubble would burst, that there would be hell to pay for all those people who bet the farm on a linear function.
What ought to be giving me smug satisfaction right now is just a source of irritation. I knew that the Deuce wouldn’t get better every day until finally he’d go home. But what is really hard to deal with is knowing that he may or may not have gotten any better for a week, but we really can’t be sure because doctors waited six freaking days to decide to inspect his chest tube that was draining no fluid.
Six days ago they told us there was fluid in his chest. Six days ago they told us the fluid wasn’t draining. Six days ago they told us they weren’t sure why the fluid wasn’t draining. Six days ago they admitted the tube might be clogged.
Yesterday, I repeat, yesterday, they pulled the tube out only to discover that—lo!—all three openings in the chest tube were clogged with a thick, pussy gunk.
In my previous discussions with the doctors I made it clear that they had my trust. I made it clear that all I asked was clear and frequent communication based on the facts. In those circumstances in which we didn’t have a complete set of facts, talk to me about statistics and percentages, what was most likely to play out. I know that no one sinks the 8-ball on their opening shot. Just tell me how many shots are likely to elapse before someone calls “corner pocket.”
Don’t bullshit me. Ever.
The request I didn’t make because I didn’t think I needed to make it was, “Stay on top of your patient.” Okay, so that’s not a request, but I could have asked, “Would you please stay on top of your patient?” I’ve received a great many nice notes from medical professionals and regular folks like me who encouraged me to stay chill and let the docs do their thing.
Which I did. I stayed chill.
And what did they do? Well, I’m not sure, but it wasn’t “their thing.” I consider “their thing” to include getting any and all stray fluid out of my son. If his primary problem is fluid leaking from his thoracic duct into his chest and thereby compressing his right lung so that he can’t breathe properly, then they should do their shit and get the fluid out. Proto, or in their terms, STAT.
Look, if this was a carwash and someone missed hitting my tires with the Armor-All, it would be no biggie. My tires aren’t going to go flat. I’m not going to lose control of the car in a turn. My gas mileage isn’t going to fall to M1 Abrams.
But this ain’t Armor-All. This is a rare and otherwise fatal condition in my son. My son who is relying on their skill and know-how to hopefully one-day leave the NICU and move to Redondo Beach. For him to go home, he needs to be well. For him to be well he must improve. For him to improve, he needs optimal treatment, that may or may not include surgery. But we can’t know exactly what treatment he needs if his doctors don’t really know what’s going on with him. And I’m sorry, but if you’ve taken five days to decide to pull out a chest tube that hasn’t removed any fluid from his body to the little measuring receptacle because it is clogged with some sort of puss-like gunk, then I think I have a right to tell you to your face that you aren’t operating with a full set of facts. And if you aren’t really operating with a full set of facts, but those facts are there to be gathered—all they needed to do was pull that tube out to know—then you aren’t really doing your job. That’s an important detail and I have a right to ask why and receive a straight answer.
Look, if I show up for a hilly bike race with a cassette meant for the flats because I didn’t bother to read the course description or look at the course profile, and I have trouble getting up the climbs because I’m over-geared, that’s my fault and I deserve to have my ass handed to me. There was data. I could have made decisions based on it. I didn’t do my due diligence.
My understanding is that once my son has been here 30 days, he will be evaluated for progress. That seems reasonable. However, if his progress depends on treatment that requires a complete set of facts, it’s unacceptable to spend 20 percent of that time wondering why fluid isn’t draining out of him.
Changing a chest tube is no picnic. If Maslow had a hierarchy of discomfort, this would rank way higher than, say, a bagel cut or road rash. You’d rather have the stomach flu than a chest tube. And you’d rather have a colonoscopy than have someone remove or insert a chest tube. But that’s no reason not to do it. Matthew was on a witches brew of drugs yesterday after they did, finally, change his test tube. Dr. Drew Pinsky has made a career out of treating people who think the cocktail Matthew was on—Phenobarbital, Lidocaine, Lorazepam and Naloxone—would make for the ultimate party. He slept the entire afternoon and evening.
We’re three weeks in and our reality is one I struggle to accept. The Deuce’s nurses know him and his preferences better than we do. I hate that. Having a nurse tell me what my son likes makes me feel like the most absentee dad since … I dunno, name the father of some mass-murderer. Most days, I feel like I’m the parent of one-and-a-half kids, if even that.
I learned that a friend of my wife’s used Matthew as motivation while she ran a half marathon last weekend. She said that every time she faltered, she thought of him and that gave her strength. That a little guy who can’t survive outside an isolette can inspire someone to run 13.1 miles is one of those outcomes no one could guess. Finding out that the Deuce could give someone strength even as his situation robbed us of ours humbled me to my core. I felt as if someone else was experiencing more love for him than I was, and in that I was both embarrassed and filled with hope. If that’s not a fresh take on Keats’ notion of negative capability, I don’t know what is.