Enter The Deuce, Part II
What we learned over following his initial day or two was that Matthew probably had a chylothorax pleural effusion, meaning fatty lymphocytes—lymphatic fluid—were draining into his chest via some defective doohickey—a duct, which is the lymphatic system’s answer to a vein—that ran from his pelvis to his shoulder. I did my best to follow all we were being told but at a certain point I was reminded of the “Far Side” cartoon about what we say to dogs and what dogs actually hear. I was hearing something like, “Blah blah, Matthew, blah blah blah, Matthew, blah.
We’re told that this usually resolves itself over a number of weeks. That means a tally of days in the NICU that can number in the 30s, 40s, 50s or even 60s. In my mind’s eye I see this thing as being something not fully formed, a body part that hasn’t finished growing and the time that passes is what’s needed to allow him to recover, although “recover” a misnomer of a term because it suggests that this body part once functioned properly and the facts suggest it never did. And I’m reasonably certain that there’s a better, more correct, more clinically accurate description for his situation, his prognosis, but the reality is, this is how most parents experience a situation like this. Initially, we hear lots of Greek. Eventually, we toss around terms like lymphocyte as capably as a physician’s assistant.
Near the beginning of that last ‘graph I used another term, a less technical one: usually. As in, this usually resolves itself. It doesn’t always. There’s a drug that has a name like a dinosaur’s that we simply refer to as, “the ‘O’ drug.” It works in 10 percent or less of patients it is administered to. That’s a terrible record. But sometimes it helps, and from what I’ve been told so far, it’s the last off-ramp on a highway that is otherwise headed straight for surgery. So far, the doctors won’t discuss the surgery with us. They say it’s a long way off and that more than 50 percent of these cases resolve on their own. I’m not a gambling man, in part, because a phrase like “more than 50 percent” isn’t sufficient for me to place a bet.
When friends ask how things are going, the word I keep using is “siege.” We’re not at war in any classic sense, but the nature of a siege is to wait out the enemy, in this case his malformed doohickey. We simply have to have more endurance than its errant function. Failing that, we will storm the ramparts, an option that scares me a good deal more than the sight I had of dirt and gravel into which I ram-rodded my face last October.
I’m spending most of my waking hours here at the hospital. A few days ago the head of nursing came around to talk with me, something I assumed was just part of their surprisingly friendly and compassionate care. By the end of the visit I concluded that part of her mission was to check how well-screwed-on my head was, perhaps because I was spending more time at the hospital than any other father, a distinction I was not aware of, nor cared about, but it meant I was at the shallow end of the bell curve of at least one population, and in a hospital, that makes people edgy.
So we talked a bit about how much time I was spending at the hospital. I told her, quite plainly that when I’m not here, I ask myself a simple question: Where should I be? Invariably, I feel that my first duty is to be here at the hospital.
I’m clear that I’m not doing anything to increase the quality of the care the Deuce is receiving. At best, all I can do is comfort him when he’s agitated, but that’s not insignificant. His mother, by pumping her breast milk into jar after jar for transfer to the hospital—and hopefully to his belly—is making the most significant contribution to his care that we can offer.
People have encouraged us to keep up our routines. Our other son, Philip, needs us to play with him. He needs to know we are still plugged in to his life. It hasn’t been easy. One morning earlier in the week he and I had a blowout with him refusing to put on his shoes or allow me to put on his shoes so that I could take him to preschool. The next morning we palled around as I dressed for a ride and I told him about a new skatepark I had found that I promised to take him to this weekend. The excitement on his face accompanied by an exuberant “oh boy” fist shake was just the jolt we both needed.
And yes, at the suggestion of others, I’ve gotten back on the bike. Early in the week I went to meet the Pier Ride, the Tuesday/Thursday beat down that serves as much a social function as it does a training one. Despite several good nights of sleep, I struggled to get my heart rate up, struggled to draft at 26 mph, struggled to enjoy the back of the pack. Less than half way into the ride I sat up, let the group go and began to spin in an easy gear back home.
The next morning was better. I joined friends for an easier roll up infamous Mandeville Canyon. The ride lasted more than three hours, long enough to leave me feeling anxious—as if I was playing hooky—but I couldn’t deny two essential facts. First, had I not been heading out to join friends I never would have made it out of the garage. Second, when I reached home there was no denying how good I felt. The stress of the week had me on edge and I was a bit hair-trigger. Just the day before I’d had a talk with the social worker because I was feeling pissed that too many people kept asking my relationship to Matthew. Because my wife kept her maiden name, Matthew is listed as “Reid,” not “Brady,” here at the hospital. As it turns out, I have a limit to the number of times I can be asked my relationship to my son in a single day. I also (and this was a surprise to all involved, including me) have a limit to the number of times any one person can ask me my relationship to my son in the same conversation. So if you ask me who I am and I tell you that I am Patrick Brady, the father of Matthew Reid, I expect your next question not to be, “And your relationship to Matthew is?” Even sitting here typing this my blood is at simmer and that was more than 24 hours ago.
Stress? Yeah, I feel some stress.
My son is my responsibility. He is also my legacy and one of the two people I most fiercely love on this planet. He is not a repository for my dreams. He is a person who I want to prosper insofar as I feel honor-bound to help him find what makes him most happy in this life. I don’t care if he’s smart. I don’t care if he’s handsome. I don’t care if he ends up getting rich. I don’t give a damn if all the other kids like him. If he’s happy, the rest will take care of itself. That’s my promise to him; I’ll do all I can to give him the resources to chase his dreams. I believe in the equation that if he’s happy doing something, that leads to being good at that something and if he’s good at something, he’ll eventually find the kind of success that will allow him to chase whatever variety of family he may want. That may be a wife and kids. It could be a partner and kids. It could be alone and with a dog. I don’t care. If it works for him, I’ll support it.
Before I can even dream about how smart he is, how athletic he is or who he might want to shack up with (let alone marry), he has a lot of ground to cover. There’s no doubt he has made progress, and this isn’t progress that is measured by some academic metric that only shows up on a chart. For that, I’m grateful.