I’m at a point where I’m no longer taking the stress in stride. I was able to do that for a few weeks, but no more. My one refuge, the bike, no longer provides a cover from the pressures that have been building.
Last week, I wrote how following a single hard effort on a climb I was unable to recover and how I was forced to let the group go after the next acceleration. That inability to dig has grown like a tumor in my muscles, preventing me from all but the most faux of efforts. Worse, something deeper has gone sour. Something has compromised my ability to descend. I know that stress is the something in question, that my reaction to the stress of the last month is what the trouble is, but the actual mechanism responsible for the degradation of my riding skills is as mysterious to me as quantum physics.
I opened the weekend with a training ride meant to help bring my fitness into sharper focus for SPY’s upcoming Belgian Waffle Ride. Less than two miles into the 11-mile ascent of Latigo Canyon, I let the leaders go. Minutes later, a friend passed me. Several more minutes and another. So it went. Of roughly 20 riders, I was among the last to reach the top of the climb. I used to routinely do this ascent in 45 minutes, and this time it took me an hour. Following all the gains in fitness I’d made over the winter, I felt like I was coming back to the bike after two weeks off, just without all that hungry motivation.
On each successive hill, bumps too short to break the group up, friends kept riding up to me to ask about the Deuce and how he was progressing. Look, I’m completely okay with many of my friends not reading RKP; most folks don’t read all that much and that’s fine. And I respect that because these people ride with me they would rather get the story from the horse’s mouth. Wouldn’t you rather go for a ride with your favorite pro rather than just read an interview? Not that I’m anyone’s favorite anything, mind you. But I get how they’d rather hear the story firsthand.
The trouble is that when I’m trying to pedal, talking about what we’ve been through with Matthew digs all the stress up, makes it present tense. To the degree that the bike can allow me to escape my worries, asking me about the Deuce steals that chance to find refuge in wheels. While other riders may be hiding from the wind, I’ve been hiding from something tougher to dodge.
My heartrate monitor’s chest strap wasn’t working that day, but I didn’t need it to tell me what was happening. With each question my ability to sustain a high hear rate plummeted. It felt like my legs were loading up with lactic acid, just without the burn. For all I know, they were.
Yesterday, I knew that I couldn’t deal with more questions, even if the news was encouraging. That we are feeding the little champ breast milk is huge. Still, each time I have to talk about it takes me out of the ride, mentally off my bicycle. So instead of heading out for one of the group rides, I took my mountain bike to Del Cerro Park in Palos Verdes. It’s a relatively small area and the riding that I do there is pretty tame. Parking is at the top of the hill, so any ride I do begins with a descent. Knowing how my descending went the previous day, I figured I’d take it easy on myself and avoid the singletrack. And while I could have bombed the fire road at better than 30 mph because there were precious few hikers out, I felt unsure of myself on a full-suspension mountain bike on a fire road.
I felt like my body was betraying me. Under other circumstances, I’d have been angry. Instead, I’ve just been disappointed and sad. I’ve got nothing to fight this with.
Personal history has shown me that I tend to respond well during a crisis. Once, I was run over by my own car. The story is long enough to require beers for proper telling. The relevant detail from that tale is this: I was the only person thinking clearly enough to figure out how to get me out from under the car. I had to call for help, then direct someone to turn off the engine, take the keys out, open the trunk; it was about this time that my mother walked outside and saw my legs protruding from under the car. She freaked out; I had to call to her to calm down—and convince her that the person helping me was not harming me—and then direct the other person to get the jack out and jack the front end of the car up enough that I could crawl out.
I stood up and my mother said, “My God, Patrick, you look horrible.”
What the appropriate response to such a statement is, I still don’t know. I went with the all-purpose, “I love you, too, Mom.”
I then spent the next five hours in the emergency room. It wasn’t until the next day as I bathed my scrapes and cuts that I began to shake with the realization that with my head stuck in the wheelwell of my car I had been inches from death.
Last fall I walked around the corner to pick up a pizza from our (my) favorite New York-style pizza place in Manhattan Beach. When I got back, our son Philip was missing. We started with the search of each room in the house. Then the closets. Then under all the furniture. Then the garage. Then under all the furniture, again. Then the closets, again. Then I went outside.
There comes a point when panic overrides pride and you just want your kid back, no matter where he or she is. I don’t think 10 minutes had passed when we reached that point. Our home was a wreck, toys everywhere, unfinished laundry out, dirty dishes on a counter. I wouldn’t have let a friend in the door.
We called 911. I gave a physical description down to each item of his outfit.
Two officers arrived with the speed we used to associate with pizza delivery. They asked for a physical description again, then I gave them a picture of Philip. Two squad cars were patrolling our neighborhood, looking for him outside. They had me double check to make sure his bicycle and scooter were still inside. They were.
Less than five minutes into the search one of the officers shined his flashlight into the back of a closet that runs beneath some stairs. My wife and I had both looked in the closet. It was so jammed with boxes that neither of us had figured Philip could make it into the space’s nethermost regions. But make it he did. When the officer waived his flashlight, Philip moved his head and the officer saw his blonde hair.
To this day, I don’t understand how he got back there. It would be easier to fit a bowling ball in a shot glass.
With Philip out, the officers thanked and our front door closed and locked, I slumped against the door, and then began sobbing with a depth that surprised even me. It was only then that I allowed myself to feel the relief that could only come from recognizing the magnitude of the disaster we had just escaped. Until we found him, every belief I had in my wife and myself as responsible people had been up for grabs. My identity was up for grabs.
So while I have evidence that I do well during the crisis, once it is past, that’s when I collapse.
That I’ve lasted this long surprises me, personal history notwithstanding. I don’t think I’d have held up were it not for all the comments here on the site and on Facebook, the many Tweets and then the amazingly personal emails I’ve received.
There’s a couplet in the Sting song “All This Time,” in which he sings:
Men go crazy in congregations
They only get better one by one
I suspect that the Salem Witch Trials are a great example of that, but in my life that has never been true. The opposite is what has proven to be the case in my life. Without the help of all those words of encouragement I think I’d have slipped down the rabbit hole by now—no passing “Go,” no collecting $200 and skidding to a halt well past the entrance to crazy town.
On my own, I can spin into crazy. Isolation is sanity’s enemy. Studies of men held in isolation in prison have show the long-term damage it can do. It’s in talking to other people that I gain perspective, that I discover hope, that I find my way to sanity. What it means to be buoyed by the words of others is to know that other people want a good life for you. They care for your happiness and success. What’s significant in that is what it says about the hope other people hold for lives that are not their own.
As those comments keep coming, they are the light at the end of the tunnel. Though Matthew isn’t home, and we don’t have a date for his likely release, we have good reason to believe he’ll come home with us.
This morning I avoided the group ride, went out after everyone had returned home. The ride was lonely and I turned home early. I barely remember the final mile or two. I know this won’t last, that I’ll be able to deal with friends again, to speak without shutting down, that riding will again be my refuge. But there’s going to be a personal reckoning once the Deuce is in the door and I don’t see a way to share that road with another soul.
I’ve been thinking about how I transitioned from foreswearing surgery to grudging consideration, to rational acknowledgement that surgery was the only reasonable option for the Deuce’s recovery. To anyone else, this may seem a relatively understandable transition, one that held no miracle epiphanies or hypocritical backtracking of attitude. I, however, have a fair memory for things my mouth issues. One of them recently has approached the speed of mantra: “As long as we avoid surgery, we’re good.”
I can willingly admit that I wanted to avoid surgery the way Grover Norquist wants to avoid new taxes. Surgery struck me as a concession. A concession of what is hard to say, but it indicated a larger failure of less-invasive therapies. It also meant that my son wasn’t quite as strong as I’d wanted to think. This was no minor flaw if surgery was the only solution.
The turning point, I realize, came during our consultation early in the week with the head of the NICU, the charge nurse, the social worker and the ombudsman. Sounds like the title of a French film, doesn’t it? During our meeting the doctor made a statement that I glossed over. I was too focused on getting the answers I wanted to really consider the implications of his statement.
But before I get to what he said, I’d like to discuss the word “imminent.” It’s a word that I’ve heard most often used by defense wonks and neocons. It’s the descriptor they attach to threats, dangers they want to act against. When someone calls something an “imminent threat,” what they are saying is that the boogeyman isn’t just around the corner, he’s turning the corner as we speak.
Imminent is a word that I would use to describe my understanding of my relationship to the earth in that nanosecond I had to consider my circumstances before faceplanting into the ground. There was no avoiding the soil, the gravel, the crash, my face pulverizing terra most firma and the planet returning the favor for my lower lip. Imminent.
The surgeon said, “I believe surgery is imminent.”
I was taking notes as he spoke and I touch-typed that statement into Microsoft Word and then hit return to catch the next significant thing he said. Judging from the open window, I typed more of what we were told, but that’s the only statement I recall from memory, the only one that required further reflection, the only one that forced a change in my views.
In her introduction to the groundbreaking volume of poems “Live or Die” Anne Sexton compared the ever-shifting mood of her work to the jagged line of a “fever chart for a bad case of melancholy.” That image of a fever chart that has returned to me as I’ve tried to digest the Deuce’s turns in condition. There have been ups and downs in his path to proper development—I’m always cautioning myself against using words like “recovery” because it suggests he was once complete and whole and the challenge has been quite different. The issue for Matthew is just reaching proper health, attaining the biologic maturation of other babies that allows them to grow and flourish once leaving the womb.
Once we realized the Octreotide has ceased to work for him, taking him from the shallow end of a bell curve well into the meat of it, we understood that he wasn’t improving as we’d hoped, that the arrow of his development was pointing down, not up. While nothing had truly changed for him in those five minutes as the doctor explained his condition to us, our understanding changed and each of those changes in the arrow’s direction reflected changes in our understanding. His changes in condition unfolded on a much longer scale with turns too gradual to track from one hour to the next.
The Deuce was fortunate to sleep most of the day following the surgery. The general anesthesia he had been on was something from which he was weened very gradually. While I wanted to see my son’s eyes, to have that eye contact, I knew that more sleep following the surgery was good for him.
Boy, was I right. A day later, as he finally started to come out of the anesthesia, he was the most unhappy he’s been in his short life. To say I can imagine the pain he must have felt as he woke is to suggest I have powers of empathy that border on divine. I cannot begin to process how his inability to fathom the world around him was wrapped in such pain. I ached each time he woke and he cried out in pain until he began to cough. Of all the reactions he might have to his situation, coughing must surely have been among the worst possible, a kind of awful that soars somewhere above having a broken leg hit with a sledge hammer. Poor kid.
Fluid continued to dribble from his chest for another day. It wasn’t much but anything at all was sufficient to prevent me from relaxing. The biggest challenge came yesterday though: The Deuce’s doctors decided he had healed enough to try feeding him. It wasn’t a victory, but it was too significant a step not to be present.
Shana made it to the hospital in time to deliver the first feeding herself. Because of his chest tube, he’s unable to be held, so these initial feeding are from a bottle. Still, it’s not the TPN IV drip that he’s been on virtually since birth. TPN is Gatorade on steroids; it’s prepared to the individual patient’s needs to contain an optimal blend of carbs, protein, fat, electrolytes and more. However, it’s not a perfect instrument. The way the TPN dumps the fats and protein directly into the bloodstream is rough on the liver. Poor Matthew had been on the stuff so long they had begun to cycling the protein and fat out of the TPN for periods of six hours out of every 24 in order to give the liver a chance to rest some; it was effectively recovery between intervals. Sometimes I can’t not see the world in terms of the bicycle.
Feeding him his mother’s milk from a bottle was going to give him a chance to actually fill his belly, to know the payoff that comes from sucking on a nipple and to experience being sated. So far, he’d been sucking on a pacifier for hours each day with exactly zero dividend. It was a wonder he had continued to persist for all the benefit he had received.
His nurse began the process of thawing frozen milk and putting 10ml servings into bottles. These servings are so tiny the amounts of fluid my other son spills as he drinks something could dwarf what those bottles contained. Gradually, over the last day his serving size has increased, though, from 10 to 15 and now up to 30ml. In his mid-afternoon feeding I sat in terror, and I do mean terror, as he spit out the nipple repeatedly because his initial few sucks on the bottle resulted in such a flood of milk he gagged. It turns out our nurse had used a high-flow nipple on the bottle and the experience was so alarming to him I had to work for a half hour to convince him the same thing wasn’t going to happen again once the nipple was switched to a low-flow one. Poor kid must have thought he’d been fed a fire hose.
The reason feeding him mother’s milk is so important isn’t an issue of nutrition. It’s the crucial test for the surgery. I likened what the surgeon did to patching a hole in a roof. The TPN IV isn’t much of a challenge for the repair to deal with. It’s a brief drizzle to the newly patched roof. To find out if the repair is really going to take, what he needs to experience is a classic Deep South thunderstorm. He needs a biblical deluge while doctors sit under the ceiling with pans at the ready. To that end, his chest tube is still in place, but doctors have turned the suction off, to make him a bit more comfortable. It’s a nice step, but the fact the chest tube is still in place is our signal that we’re still watching and waiting to see if his thoracic duct can deal with the lipids (fats) in his mother’s milk.
This isn’t a live-fire exercise for a new soldier, this is the first patrol of Baghdad. And until the convoy is back in the compound we count off hours with no drainage the way I suspect soldiers count of kilometers completed. Each additional click is a bit closer to home, but you’re not safe until you’re home. Similarly, each new poop is a suggestion his system is doing what it needs to do.
Just how long this purgatory of watching and waiting will persist I have no idea. What I know is that I’ll persist in my devotion to being here. I want my wife to give him as many feedings as she wants and those that she can’t be around for, I’ll try to add in myself, but because of Philip, we can’t simply move here which means that most of the night feedings will be provided by his nurse.
That a nurse can report to me on his preferences and foibles carries the simultaneous pleasure of learning something new about my son, while adding the discomfiting realization that someone else is around him more than I am. It brings up all those dichotomies of blessing/curse, poison/cure.
It would be easy to overestimate his health based on the many metrics of his progress. He’s got fewer holes in him, fewer needles and tubes delivering into or transporting out of him medicines and waste. If nothing else, he’s more comfortable. That’s something, for sure. And there’s more of him as well; today he weighs 9 lbs., 12 oz. That’s more than two pounds up from his birth weight.
But this is a NICU. While I appreciate how everyone wants to project what my life will be like with the Deuce in our ideal future, a future where he’ll be an avid roadie with the willingness to let me suck his wheel—talk about idealized futures—this is the NICU. When Shana came downstairs to meet me and take Philip to his second park of the day, there were tears in her eyes and she told me not to go up yet. This is the NICU. Outcomes here are far from certain and today they lost a baby. It was born only yesterday and was admitted to the unit extremely hypotensive and showing signs of high acidosis. At a certain point the staff realized the baby was a lost cause and the entire extended family was admitted into the pod. Shana was with the Deuce as they wailed in the baby’s final hours. She left the Deuce’s side to give them the illusion of privacy.
This is the NICU. There will be no cheering until we get the kid in the door at home.
Yesterday morning I joined some friends for our standard Wednesday ride, a late-rolling affair that’s as much a refuge from the normal work day as it is workout. Most of them know the score and asked how the Deuce is doing. In most cases all I could do was shake my head and say “Not good. The doctor’s want to operate.”
I’m not always the chattiest of riders and this was an occasion when I quickly realized that things would be better if either I was at the front and pulling or at the back out of the matched pairs. On the climb up Mandeville Canyon, where residents are known to have all the friendliness of the Taliban (only one car buzzed me as I rode on the white line on this trip up), I made a heavy surge near the bottom and took my bloodstream to a beat below boil. The desire was less to see how fit I was than to inspect the toll the stress was taking. I reasoned that following a single hard pull I should be able to recover and stay with the group, unless the stress really was that bad. In that event, I knew after a single effort my body simply wouldn’t recover and I’d be left doing the bicycle equivalent of strolling through the mall.
At the top a friend said, “You held it pretty long.” That’s a polite way of saying I had had a single, foolish, pull in me and after hanging on the group for a while following my effort one tiny surge by another rider demonstrated that recovery was for people in hospitals, not me, and I shot out the back of the group.
When the group stopped for coffee in Santa Monica that gave me a chance to split off and head straight for home. I could only muster middling effort; 21 felt like 25, but I pressed hard as I considered what options the Deuce might have.
The surgeon hadn’t called. Why not? Would the doctors continue to tell us that it was okay to wait but they would suggest doing the surgery now? What would happen if we chose to wait?
Even as I was walking through the garage I was pulling my phone from my back pocket. I had a text from my wife and a message from the head of the NICU. The surgeon was at the hospital. He wanted to meet with us. He’d had back-to-back surgeries the night before which is why we didn’t get a call.
I drank my recovery shake in the shower.
The drive to the hospital seemed to be going well until I looked down and noticed I was doing 85. “Easy there chief,” I said to myself. “The hospital is likely to last another four or five hours, at least.”
The head of the NICU and I spoke on my drive and I told him I’d meet with the surgeon when he was available. “I’m really thinking about this, aren’t I?” I said out loud in the car.
Rapport is something for which there is no saccharine. No substitute will suffice. Either you build it with someone, or you don’t. I’d met the surgeon briefly a day or two into Matthew’s stay at the NICU so when he walked up, I recognized him, but what he said, “I recognize you. We spoke shortly after your son was admitted, I believe,” came from a personal place. It was something the doctor/parent relationship did not require, but it was just the thing to break the tension. With that, he asked me what questions I had.
“What I’ve struggled to understand is exactly what his current condition is, just how much effusion there is, how much fluid he’s giving off on a daily basis.”
“It doesn’t really matter. This is a binary problem. Either his duct is leaking or it isn’t. It’s leaking. How much isn’t really important. We’ve tried the two therapies there are other than surgery. Just waiting and letting him develop didn’t work. Adding Octreotide and waiting didn’t work either. In my eyes, we are out of options other than surgery.”
The hyper-logical geek in me loved that he’d used the phrase, “binary problem.” I couldn’t not see his point. Yet, despite his clarity and rational evaluation, he had a warmth to his responses and a relaxed manner as he slouched in the chair next to mine that was more disarming than that of a hostage negotiator.
He then told me about the surgery and how he would try to do it laparoscopically, via a tiny incision in his side and aided by an even tinier camera. Our consent would give him permission to make a big incision in his chest if necessary, but he would try to avoid that if possible. I drew half a breath. Next, we discussed just what the fix was; he was going for the triple-shot approach. First, he would attempt to find the source of the leak and suture it closed. Next he’d place glue over it to try to seal it, the way you might put tar on a leaky roof. Finally, he’d scar the lung so that it was stick to the chest wall, something it’s already supposed to do—stick, that is—but isn’t doing because of the fluid in that space. Finally, he’d insert a second chest tube, this one on the right so that if the leak persisted and began to fill the other side of his chest there would be a way for that fluid to escape.
He asked if I had any other questions.
“Not really. I’ll talk to my wife as soon as she returns from pumping and we’ll sign the forms; I just need to have a chance to talk to her before we sign them.”
The basic logic here is that you just want to go in once and be very, very thorough. I found that oddly appealing. I mean appealing the way I mean I find dying in my sleep more appealing than being eaten by a lion. You know, if you’re gonna get a choice and all….
Half an hour or so before Matthew was wheeled into surgery his nurse inserted a feeding tube in him and began to administer—if you can call it that—whipped cream. He might as well have been a bound goose given the way 40ml of the stuff was pumped into his stomach. Crazy as it sounds, the whipped cream was meant to put something fatty into his system so that—hopefully—it would leak out his thoracic duct and show the surgeon just where to scorch the earth.
What he did next was something everyone within earshot held in sympathy. He began puking up a bit of the whipping cream. He hadn’t had anything in his stomach in more than two weeks. However large it had been, perhaps the size of a cashew, it was even smaller now. What were we talking? Pea? It shouldn’t surprise anyone that stuff was coming up; it didn’t surprise the nurse, anyway, but our nurse was trying to catch and quantify just how much was rejected so she could consult with the doctor. Was this a problem?
The process of disconnecting the Deuce from each of his various devices and Medfusion pumps reminded me of taking down a computer network. Things were disconnected in an organized and systematic fashion. I looked at it and couldn’t tell where you would begin … or end. And then, in a coordinated three count, the nurses picked him and his assorted lines up and transferred him to the cart called “Transporter 1″ that would be used to roll him to surgery.
Damn, this is really happening.
I was aware that of the many decisions I’d made in my life that if this one went well, it would go largely forgotten except by my wife and me and only in our most private moments. But if this, to use the popular term “got sideways,” it was a decision that would haunt me to the end of my days, one that would rob my peace on those occasions when I would most need it. If this didn’t go well, I’d spend the rest of my life trying to forgive myself.
I followed the nurses out the door and to the elevator. Inside the elevator, I bent down to talk to the Deuce and try to comfort him. With my torso at 90 degrees to my legs I felt what must have been an alarming sensation for him as the elevator dropped. I’m not normally bent over when in an elevator, so the sensation was every bit as foreign to me as it must have been to him. We locked eyes and I kept talking. Down a floor, I followed the nurses to a doorway until another nurse stepped out and steered me down another hallway, signaling the end of my time with my son. I felt like I was driving a team car and the nurse was the commissaire that steps out to signal me to turn off the course in the final kilometer. No finish line for me. That was it. If things didn’t go well, that had been my last glimpse of that little guy. She guided me to the waiting room for family members of surgical patients and I quickly scanned the room, realizing that the collection of anxious people, rambunctious kids and sobbing mothers was too much for me to sit there in any relaxed way. I walked straight through and climbed on the elevator to head back up to Pod G.
That Shana has spent so much time pumping her breast milk is something I alternately envy and pity. I admire the effort she has made in pumping her breast milk. She has devoted a part-time-job’s-worth of hours to this. Bottle after six-ounce bottle goes into our freezer. All the space they allocated for the Deuce in the freezer at the NICU was filled more than a week ago. Yet, I’m aware that this has been a labor without reward. It’s hard to do anything this demanding without some positive feedback and while I’d like to think my praise is magic, I’m less than a pale substitute for the bond that comes from your baby at your nipple. My wife is the unsung hero in all this.
We sat beside the empty isolette to which we hoped the Deuce would be returned. I know we talked during that time, but I couldn’t tell you what about. Those hours are an erased blackboard—I can tell something was there, but I can’t quite read it.
In the way that all things we expect to happen happen, eventually the door to the pod opened and they wheeled Matthew back in. At minimum, we could relax because he had survived the surgery.
When I’m not at the hospital, I pine for the smell of Matthew. Newborns have a smell that is as fresh as fruit and as mammalian as a dog’s. The smell is pleasant in direct proportion to how clean they are. One hot afternoon in a car seat and a baby can ripen like an old water bottle with protein smoothie. I’ve been sitting by his side for most of the last hour watching him sleep. Twice, I’ve opened his isolette to get a whiff of him. Despite the faint smells put off by all the medical equipment, that aggressively sterile air that occupies an incubator, I can still discern that inimitable newborn scent. It’s rose petals and dreams, talc and mother’s milk.
I’ve still not held my son. Here we are, more than three weeks since his birth and I didn’t even hold him long enough to pass him from the obstetrician to the neonatologist. The best I’ve managed so far was one afternoon late last week when his nurse turned him on his side and I was able to rub his back. It was the largest patch of his bare skin I’ve been able to caress. Those lazy afternoons of shirtless naps with his older brother Philip when he was an infant seem less memory than fantasy, like I borrowed a memory from someone else who told the story so well I imagined it into my own life.
I’ve been watching him sleep, studying him, trying to memorize him. Tonight my wife and I will take a phone call from the head of pediatric surgery for Kaiser in Southern California. We are going to decide tonight whether we are willing to allow this doctor to perform surgery on our son.
I’m studying my son because I want to know him. I’m studying my son because I’m afraid of the surgery. I’m studying my son because of that clichéd “if something happens.” I’m studying my son now, so that if we lose him, I might better remember him.
Our doctors have come to the conclusion that the Deuce needs surgery, that the best outcome for him is if they perform a ligation of his thoracic duct. The prospect of someone cutting open my three-week-old son scares my like no Stephen King novel ever could.
I don’t feel like we have as full a set of data as would help any of us make this decision. Certainly, I don’t know enough to feel good about the decision, and by “good” I mean confident that this is absolutely what we should do. The amount of fluid draining from him has been both significant and fluctuating wildly. Three days ago he drained 59ml, the next day 67ml and then yesterday 40ml. The fluctuation dispenses hope like an empty vending machine.
Our doctors—Matthew’s doctor’s—are willing to allow us to wait, to see if the effusion decreases. No one knows what to expect. The head of our neonatal unit says that prior to the Deuce, he’d seen maybe a dozen cases of chylothorax effusion. Yet even as they are willing to allow us to wait, they say their advice would be to operate now. Kaiser’s best neonatal surgeon will be in Downey today and he’s not available very often, as in no one knows when he will next be at this hospital to do non-emergency surgery.
Which brings up an interesting point regarding the Deuce. His case, because he is stable, is considered non-emergency. Even though were we to remove him from his isolette he would die in a matter of hours, his situation isn’t an emergency because he doesn’t need the surgery immediately in order to survive. This surgeon may not return to this hospital for weeks, we’re told.
I peppered a different doctor with my questions regarding how we should evaluate Matthew’s current state, the long gap in data, the potential harm leaving all that fluid in him for so long, his chances with the surgery and without. I made the point, “For us to grant consent, we need a clear picture of how he’s doing and I don’t believe we have that. How do we get it?”
The doctor capitulated and said we should talk to the surgeon. He left and when he returned a few minutes later he said the surgeon would call us later that day, some time after 5:00.
The call never came.
My friends in project management and startups like to talk about “the critical path.” For those unfamiliar with the term, it’s the real world’s answer to the crux move in climbing, the hors categorie climb in a Tour de France stage. What these doctors don’t seem to appreciate is that we—our consent—is their critical path. If they give us bad information, incomplete information or ignore us, they don’t get consent.
While I can’t say if they’ve been giving us the soft-sell or not, we’re able to count and every doctor we’ve talked to at this point thinks surgery is a good idea. That detail brought me around to a point of willingness, willingness to discuss the surgery.
Weighing on this is what my wife told me a nurse said of the surgeon in question. She said, “Melinda thinks he’s amazing. She said he has ‘magic hands.’”
I’m in a space where I know I would benefit from a ride. I don’t feel like I can go hard, but I am aware that there’s considerable steam in the boiler, that I need to blow some of it out of my system. Yet I’m concerned that what I need to do is pull on cotton, not Lycra and head to the hospital and see if I can’t talk to this surgeon. Emotionally, I’m still not ready for the surgery, but they’ve put this fear of availability into where I tremble at the thought that The Who might not come to my town on their next tour.
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.
There will be chaos—keep pedaling
This is, perhaps, the wisest statement I’ve ever heard about riding in a pack. I’d love to know who first uttered those words. Who had wisdom enough to say to a friend what might as well be known as the Cyclist’s Prayer? What was the occasion? Better yet, what was the circumstance that first taught a rider that lesson?
A teammate said that to me before a race sometime in the early 1990s. I’m reasonably sure it was before the Bear Mountain Road Race that the West Point cadets held as part of their annual collegiate stage race. What occasioned the comment was a descent on the course in which simply freewheeling inside that pack was guaranteed to see you hit speeds in excess of 50 mph. For me, it would be the fastest I’d ever gone on the bike, probably by a good 10 mph. He said that as riders felt themselves accelerate, some would start to freak and that it was important to put fearful riders behind me. It was good advice.
Two years later another teammate said it to me, though the circumstances are less clear to me now. It struck me because this teammate had never met the previous teammate. Their lives were separated by years, degree programs and geography. And yet, it was the same advice in a different situation. Many years would pass and then in the comments to a deeply personal post I wrote for Belgium Knee Warmers a reader shared that a teammate had once told him before a team time trial, “There will be moments of chaos, keep pedaling.”
For most of the time that quote has rattled through my gray matter, it has served as a rule of thumb, much like the advice to race car drivers to always aim at the crash because by the time you get there, it will be elsewhere. The advice to keep pedaling is comprised of layer upon layer of wisdom. In it, there’s the simple physics of a bicycle, that under power your weight will be centered and the bike will handle better, that if you’re not slowing down, the gyroscopic effect of the wheels spinning means you’re more apt to stay upright—even if you are bumped. There’s the reality of bike racing, that the worst expression of chaos is a crash and if you are pedaling then you’re probably not crashing. Another great truth buried in this little koan is that bike racing is, at its very core, chaotic. If you are to make peace with bike racing, then you need to make peace with chaos. The final kilometer of any race is the ragged edge of disaster itself, one narrowly missed explosion of metal and bone after another, resulting in personal glory for one rider and something approximating relief for another hundred or so survivors.
In the last few weeks, I’ve been thinking about that quote the way I like to think about my favorite quote by William Faulkner: “I never know what I think about something until I read what I’ve written on it.” There is no truer statement that gets to the heart of what makes a writer tick. We write our way into opinions, epiphanies, existence itself.
There will be chaos. Of that, I’m certain. There was a time when I would have railed against that idea. I’d have insisted that life didn’t have to be that way. And I was right; life doesn’t have to be that way. But it is. Chaos is beyond my ken, beyond my control. And it’s in every corner of my life. It is the work of entropy itself, that second law of thermodynamics that stipulates everything breaks down.
Some chaos isn’t so tough to deal with. The chaos of my son Philip’s toys on the living room floor? A bit uncomfortable if one is caught underfoot, but not a biggie. The chaos of the Deuce’s biology? Not something I’m at peace with. The real struggle is the in-between stuff. Modern life is sometimes compared to those Chinese acrobats who spin plates on the ends of wooden dowels. In my case, one plate holds Philip. Another holds Matthew. There’s one holding my wife Shana and a separate one for her mother, who will be with us another week. There’s what ought to be my work life and for much of the last week, I’ve added to that pressure a fresh dose of tasks in the form of everything I’m doing for an upcoming Kickstarter campaign. This afternoon, I was handed yet another plate to swirl into the air when the “check engine” light on my car came on as I was trying to drive to the hospital for some time with the Deuce. It was all I could do to nurse the lurching beast home. Not a bill I want … or need. Damn entropy.
Chaos was what I felt when I realized there would be no seeing the Deuce today.
So, yes, there is chaos. But that’s not how that quote goes. It states, “There will be chaos.” In that I hear the lesson of acceptance, that no matter how much I want to get through this particular chaos, the future will hold more chaos. Acceptance is my reminder to myself that I might as well chill; any plan I have isn’t going to it—the plan, that is.
The second half of the quote—”keep pedaling”—is an imperative. It isn’t an invitation. It isn’t a suggestion. It isn’t a request. It goes Nike’s “just do it” one better because in order to keep pedaling, one must already be pedaling. In as much as this is an imperative, it is also an assurance; you’re doing it right. Now just keep doing it.
I have begun to see this little koan in increasingly large contexts. Several weeks ago, when I was trying to spend every waking hour at the NICU, it became an admonition to stay on the bike, to keep logging miles. The drive wasn’t for preserving fitness, of course, it was just about stress relief, getting out there and clearing my head so that I would be more useful to my wife, more at peace when at Matthew’s side and more centered when talking to doctors.
It has come to serve an even larger role in my life, though. It’s a kind of moral north star for me, suggesting that what I’m doing is good and I can take heart in the idea that I’m on the right track and I needn’t change anything. It’s important to show up, to be present every day. It’s good for me; it’s good for my wife and it’s good for my kids.
Of the many things I need right now, a promise does me more good than all the kilometers I’d log in a month of Sundays. And that saying is nothing, if not a promise. This is going to be weird. It’s not really going to be fun. It’s not over, either—won’t be for a while yet.
But I’m going to get through and what I’m doing right now is what’s going to get me through.
The text was simple enough: “Call me when u can”.
I’d not have seen it for a couple more hours had I not been pulled over at the side of the road. I was four hours into what was likely to be a five-plus-hour ride for the simple reason that I’d been unable to recruit anyone to turn around before Point Mugu. We had dropped a rider somewhere on the way back and leaving people for dead is something that violates my sense of the social contract among cyclists.
Put another way, in my mind that’s seriously not cool.
It didn’t help that I might have been part of the problem. I’d taken some long pulls at the front and wasn’t entirely aware of what was happening behind me. So once I was aware, I told my buddies to stop at the next gas station and I was going to pull over and wait for our rider. After about five minutes, I pulled out my phone to text my buddies to let them know I was still waiting. That’s when I saw the text from my wife.
I rarely see a text from her when I’m riding. She sends them occasionally, but they are always the same thing: “When will you be home?” She’s okay with not receiving a response most days, or at least I think she’s okay with not getting a response. Usually, I’m riding with breaks that range between few and none, so it’s not uncommon for me to see her text as I’m telling her about the ride—after I’ve arrived home.
That she wanted me to call, that she wanted me to call before I got home, that she wasn’t willing to text me whatever she had to say, well it all added up. It felt more like subtraction, like I was going to be losing ground, but I knew well enough what the call would cover. The call was going to concern Matthew. A day-and-a-half before doctors had discontinued his Octreotide (that I can say/type that word without a hiccup is kinda disturbing). The most likely reason for the call is that doctors had found more fluid in his chest. The call was going to tell me something that wasn’t surprising, but was a long way from good news.
Our rider was nowhere in view, so I dialed. As expected, my wife told me there was fluid in the Deuce’s chest. He was back on the Octreotide and they’d turned the suction back on to hopefully draw out the fluid around his right lung. I told her I’d do what I could to get home as quickly as possible and then on to the hospital. And with that our wayward sheep rolled up and we rolled toward our rendezvous. If nothing else, I thought the extra mile or two of company before reaching the gas station would be good for his spirits. My plan had been to tell him encouraging stuff about how strong he was and how sorry I was that we’d rolled away from him.
I managed to apologize, but after that I fell silent. I think I may have issued a forceful and lengthy exhale, the signal that something’s rotten in Denmark.
“What’s up?” Maybe he was concerned that there was no escort back home. I said something about “son” and “setback” and mentioned how my role was to keep my wife calm. I didn’t mention how I was two hours from dealing with any of this, that until I reached the hospital all I’d be able to do was obsess, and I mean that in every sense. The only thing I was going to do was obsess.
On the way to the hospital, traffic slowed on the freeway; I was doing roughly 40 when a few motorcycles came by me in the carpool lane doing at least twice my speed. The phrase, ‘As if I was standing still,’ rang in my ears until I saw the Roman candle of white plastic and rolling bike and body. At a break in the carpool lane a sedan swerved into the carpool lane just as the motorcyclist and another rider passed a car. The playback in my head suggests the rider who went down bounced off the car then clipped the back wheel of the other motorcycle before high-siding.
I called 911 and they transferred me to California Highway Patrol to whom I reported what I’d seen in bullet-point form. Location, direction of travel, vehicles involved, injury, high rate of speed. They asked me my name and I hung up. At that point, I was ready just to turn around and go home.
Wait, it gets better.
Shortly after I got to the hospital, a couple arrived in our pod—Matthew had been moved to G—to see the baby next to Matthew. Naturally, the nurse, who has never seen them before, asks to see their ID bracelets. They’re not wearing them.
Allow me a brief digression here: When Matthew was born, he, my wife and I were all issued bracelets with a number stamped in them at the point of manufacture. The number matched on all three bracelets. The nursing staff put something even greater than the fear of God into me: the fear that if I removed my band, I’d never be able to see my son for as long as he stayed in the hospital. So when edema caused my wife to balloon like a tube inflated without a tire around it and her hand started turning purple beyond the wrist band, they cut hers off, but not before everyone agonized about what should be done next. Should they issue a new set of wrist bands? Should she just keep hers? Would the hospital administrators get upset? We put the band in her purse and waited for someone to flip out.
So both the mother and the baby daddy aren’t wearing their wrist bands. The nurse says ‘fine’ and asks to see ID. ‘Do you have driver’s licenses?’ She doesn’t have hers. He doesn’t have one. At all. ‘Do you have any ID, a wallet with anything?’ No. ‘How’d you get here?’
“Oh, we drove; I got my car down in the lot.”
As this is taking place baby daddy has his back to the nurses and is staring into space. He gets mad points for being completely unperturbed by this (in the retelling my mother-in-law wondered if he was stoned, a thought that—inexplicably—hadn’t occurred to me). Perhaps he didn’t know that at this point the nurse should have just tossed them out. She didn’t do that. Instead, she gets out the mother’s records and asks her for her address and the last four of her Social—something she manages to deliver. Him? Nothing. He could have been anyone, but they let him stay. The rest of the nursing staff is walking around with the raised eyebrows of, “Can you believe this?”
To her credit, the nurse was just trying to avoid sending a child’s parents home. She broke the rules for as decent a motivation as one might have. Dispensing with their protocols didn’t bother me. What bothered me was that I couldn’t help feeling that this helpless child—one with an effusion far worse than Matthew’s—deserved better than these two fuckups.
The neonatologist sat down with me and we went over the Deuce’s situation. They had stopped the Octreotide and some 36 hours later they did a chest x-ray (he’s had at least one per each day on the planet) and found fluid in his chest again as I expected. The doctors would have been more surprised if there had been none. effusions usually take a month to resolve. Two weeks would be unusual. They backed the drug off less because they figured he must be well than they needed to check and see if he’d made any progress in that time. The doc told me that it seemed like he might have, but they couldn’t really tell because the fluid wasn’t draining and they weren’t sure why that was.
If I’d had any reason not to trust him when he said that Matthew was doing well, that they were pleased that he was stable and felt he was making progress, that evaporated when I heard just how frankly who could speak to the parent of a newborn. The parents of the 480gm girl next to Matthew had departed after a seemingly brief visit and the doctor was now calling her at home. I’m not sure what he said that caught my attention, but I’ll never forget the words he spoke as he walked out of our pod: “I’m not going to lie to you. The situation is not good.”
For those keeping score at home, my day had included a long ride with friends knocked out at a tick or two under race tempo. Win. A quick post-ride lunch consisting of Wahoo’s enchiladas with a buddy. Also win. A motorcycle crash on the freeway. Lose. Witnessing the clueless attempts of a couple of kids to verify their identity as the parents of a newborn holding the biological equivalent of a pair of twos. Big lose. Finding out Matthew was producing fluid, fluid that was currently staying put. Yeah, lose.
Wait, it gets better.
Next-door baby needed some procedure that I assumed was more than drawing blood but less than surgery. Staff drew the curtain around as I waited for the shift change; I wanted to hear what info the our nurse deemed important enough to pass on to the next shift, plus I’d have a chance to be around for his next chest x-ray. Matthew had been awake and I’d been talking to him, telling him about my day, the new skatepark I was planning to take his brother to the next day, how I was hoping to catch up on my favorite show, Archer, that night after dinner. Explaining satire to a newborn isn’t as hard as you think.
Then I heard a gasp and an “Ohmigosh.” I was too spent to keep track of what was being said. It washed over me like a heater set on full blast, a buffet of other peoples’ panic. Things weren’t going according to plan and things were getting serious, STAT. While I had every right to hang out with my son and wait for the changing of the guard, not to mention checking out the x-ray, I wasn’t feeling good about being an accidental witness to whatever was taking place eight feet away. Decorum suggested I leave. Well, more properly, my sense of decorum demanded that I leave.
As I drove home there was still a CHP cruiser with its lights on parked at the site of the crash.
An oxygen line has been taped to the Deuce’s face once again. It’s blowing normal air, but it is blowing at two atmospheres. Of course, his rest isn’t the gold standard it had been. The thinking is that air blowing in him will help the lung inflate more fully. That should make the Deuce breathe more easily and fully, and it may help push the fluid in his chest out. What I know is that either that outcome of his body reabsorbing the fluid are acceptable outcomes. Of course, I am aware that you don’t have to be too inquisitive to conclude that they doctors will take action if the fluid stays put with the same stubborn intransigence of my other son on the couch at bed time. But just what they’ll do is an answer I don’t have.
And right now, I’m not ready for it, either.
Initially, doctors placed his Tininess the Deuce on a ventilator because his lung function was so marginal. Even though they used components small enough to put on a G.I. Joe, his head still looked like he was wearing a football face mask sans the helmet. He was anxious, uncomfortable and though new to the world, not a little pissed off. I think back on how I was once made to feel uncomfortable on my first day of a job and how quickly I came to detest that job and I couldn’t help thinking that the Deuce deserved a better shake than all that plastic.
Fortunately, his first big step was demonstrating stronger lungs, and that allowed doctors to replace the ventilator with just oxygen. For a while, the air flow was at two atmospheres, which is the breathing equivalent of drafting your buddy at 20 mph. Eventually, they turned the oxygen down to a single atmosphere before removing the oxygen altogether, less than a week after his birth.
Seeing him breathe on his own was quite a relief for us, and it was the first big step, strength wise, for him. But it has paid another benefit that could easily be underestimated: That’s one less piece of equipment attached to him. Three days later they removed the O2 line and then a day later, pissed off and tired of being pissed off, he pulled out the feeding tube that was running in his right nostril.
I should add here that having all that plastic off him did yield another benefit, one not insignificant to his mother or me: I can see his face in full and damn if he isn’t yet another handsome Brady.
As cyclists, we’ve all crashed at some point. And as you know, road rash aids sleep the way a wet chamois aids a long ride—not at all. I knew once he was more comfortable, he was going to sleep better. And if there’s another thing cyclists know, it’s that when you’re uncomfortable sleep doesn’t come easily and recovery comes slower.
Once the Deuce’s face became a tube-free zone his sleep did improve. That was a week ago. Since then he has slept more peacefully and for longer periods. That on occasion he has slept through my entire visit doesn’t bother me a whit. Biologists like to say sharks are eating machines. I call Deuce the growing machine. The more he sleeps, the more he grows.
We’ve also had reason to be encouraged because the fluid draining from his chest stopped last weekend. I’m told that initially he was producing more than 90ml per day. Late last week he produced only 30ml. Then, over the weekend, he stopped producing any fluid at all. That’s progress of an order that encourages his doctors and nurses. Still, his body needs to do some growing and adapting, and the best way for that to happen is if he’s draining as little fluid as possible. In my head I think of how hard it is to stack sandbags at the bank of a river if it is already cresting. If you can start stacking before the river crests, the job is much easier. To help cut the production of those fatty lymphocytes, the doctor has administered a drug called Octreotide, which sounds to me like the name of a sea-going dinosaur or perhaps a spy organization that James Bond needs to foil.
Ask a doctor or nurse any question about Octreotide, such as, “How much do you plan to administer?” or, “How much does a dose cost?” and you’ll get a curious response. The first thing they tell you is, “We don’t know how the drug works.” Why they all lead with that (and I’ve heard that statement from four doctors and five nurses), I can’t pretend to know. What I do know is that it does decrease the flow of the fatty lymphocytes and it runs $1000 per dose. That last detail nearly gave me a panic attack.
Because most of the time we’re here he is asleep, we have pretty narrow roles. Before the ventilator was removed his sleep, at least when we were here, was brief and fitful. Helping him relax so that he wasn’t so agitated was my one real job. I’ve spent a lot of time reading or writing. At some point while I was out last weekend the nurses commented to my wife on just how much time I was spending in the NICU. They told her not only was it unusual for a parent to spend so much time there, it was especially unusual for a dad to spend that much time there. That they’d make any mention of it mystifies me. I’m not doing this for some sort of “Best Dad” award from the nurses, and having it mentioned at any level makes me uncomfortable. I’m here because I need to be. That’s just my conscience at work. Honestly, I don’t know what else to do. Maybe their opinion of me changed when I didn’t come for three days this week because I was sick. Who really cares?
While we’re encouraged with his progress, his situation isn’t like with the flu, where once the fever breaks the outcome is all but assured. The distance he has covered since he was admitted is enormous. Doctors plan to end the Octreotide treatment soon. The progress he has made suggests his condition is a football spinning toward goalposts—headed in the right direction. But his condition is also like that football in that unless it passes those goalposts, there’s no score. Until the doctors are certain his body has stopped effusing that fluid, he’s headed for surgery, and for whatever reason, the likely outcome or how far in the future that necessity might appear, the doctors absolutely refuse to discuss the surgery with me.
The one detail I was able to elicit from a pediatric surgeon is that the surgery is difficult. It is difficult because the doohickey in question—his thoracic duct—is hard to find. Even though it functions like a vein or artery in that it transports a fluid from one part of the body to another, it is filled with a yellow fluid, rather than blood and so it doesn’t show off with the distinctive contrast that we see with arteries and veins. It doesn’t take a rocket scientist to understand that because this thing runs along the spine but behind the lungs a great many small and delicate organs would have to be moved. I think back on the mess I created last time I emptied the garage in an effort to clean it up and organize it better.
In refusing to discuss the surgery with me, not whether he needs it or not, but what the surgery would entail in detail, I’m left feeling more frightened of it, more certain that I’ll pray to any God—every God—if there’s any chance it might eliminate the need for even one scalpel.
The enormity of what we’re facing comes back in odd and surprising ways. There are details I process and dismiss if possible. Some just hang in the air unprocessed. On the day Matthew was admitted to the NICU here at Downey, when he was still just the Deuce, someone gave me a tour of the NICU. I heard how my son would be tended by his own nurse 24/7, how there was a private lactation room for my wife to pump, that there was a special freezer for her milk, how babies leaving the NICU “graduate” complete with a ceremony in which “Pomp and Circumstance” is played—detail after detail meant to reassure me that he was in a thoroughly superb facility. One detail hangs out there, unable to persuade me that our son is as healthy as they seem to want to convince me.
The NICU here is arranged in “pods” of six incubators. The pods are labeled alphabetically, with the healthiest babies, the ones about to graduate, held in pod “A.” Each successive letter means the case is a bit more serious. Matthew is in pod “H.” There are only eight pods. The math isn’t hard, is it?
One night the power went out while we were here. I’d forgotten about it until my wife asked one of the nurses about it the next day. When the outage hit, the lights went out for what seemed like two, maybe three seconds. Then they came back on as I expected, thanks to the generators. Filed somewhere in the recesses of my gray matter is a memory that hospitals have generators that will run, at minimum, for eight hours. I knew this was part of Southern California Edison’s service territory. I knew from having worked in communications for their Transmission and Distribution business group they’d have a couple of troublemen on the case in less than an hour. The popped transformer or downed line would be back in operation before our heads hit the pillows. I ceased to think about it by the time we were home.
In an email friend shared with me the circumstances of the birth of one of his children, how his wife was taken from him moments after his son was born and what little the doctor told him included odds of only 50 percent. As my heart was going out to him in terror, this despite knowing that he, she and their sons are all healthy, I flashed on how an infection began in my wife during the late stages of delivery. How she started running a fever and how we were told the danger threshold was 100.4 degrees Fahrenheit.
Hayzoos Hardened Christo! How do you forget a thing like that? By the time Matthew was delivered we were in a race to get him out because her temperature had risen to 100.2. No one would tell me just what would happen if she hit the magic number, though when I asked one nurse, “Caesarian?” she shook her head and said, “No, nothing like that.”
Okay, if not that, then what? I never found out. Doesn’t matter. The fever broke, she finished her rounds of antibiotics, stuff so powerful it burned her arm as it went in and she squirmed like a worm on a hot sidewalk.
What I’m left with is a new normal. It’s temporary, but anything you do for a month becomes a routine. I’ll gradually figure out how to keep up with the email that’s burying me—it turns out the wifi here on weekdays is weaker than watered down Gatorade—and how to start shipping orders from the RKP store again. I’m making notes of the music I can listen to that doesn’t make me snivel and wipe my eyes. Turns out it’s a shorter list than I expected. We’ve met with the people in admissions and got a number from them, one that describes what we’re on the hook for on a per diem basis; we don’t have a way to resolve it yet, but knowing what we’re looking at gives me a way to think about what I need to accomplish. It’s a bit like planning for a road race you’ve never done—at least let me know how many miles it is and how much climbing there is.
There it is again, the bike. I’m not exaggerating when I tell you that without the bike I’d be lost right now. From riding them to melt away the stress pedal stroke by pedal stroke, to thinking about them as a way not to obsess on my son’s care, to all the support I’ve received from the friends. And how my definition of friend has grown; naturally there are all the people I see on the rides, they who may say nothing more than “congrats” as they ride by, but it has expanded to include all those of you who have emailed me and commented here at RKP. Anyone who would share something so personal as the successes and losses you’ve experienced at this fragile entry point of life is a true friend. Amazing how much you can gain even as you stare into the abyss at what you might lose.
I live in a world with little certainty, but plenty of answers. The number of things I know with certainty I can count on one, maybe two hands. Beyond the love of family, my life has taught me that nearly everything is up for grabs. From where I live to how I earn my living, any of that can change, and sometimes as quickly as a snowflake melts.
A pilot friend of mine likes to say that such a view of the world teaches you “situational awareness.” Answers change from day to day, moment to moment.
Knowing that Matthew’s condition yesterday may not be his condition today or tomorrow may mean less certitude, less assurance for me, but it means I’m less surprised by changes. In my life, that outlook leaves me feeling calmer, perhaps because I think I’ve got a better handle on reality that way. Some of the answers the doctors give us aren’t what we’d expect, sometimes they are better, but I try not to make the mistake of assuming that any improvement he notches is the new path of his growth.
That sort of thinking leads to real estate bubbles.
And though there are plenty of answers to even the most mundane questions in my life, I’ve been presented with one question to which I simply don’t have a response.
“What can we do for you?”
I’ve received texts, emails, notes on Facebook and phone calls. From family to friends and even acquaintances, people have reached out with generous offers to ease what we’re going through. I see this as a demonstration of the idea that it really does take a village to raise a child. This is a community coming together in the kindest way possible.
I have no idea how to respond. I went through this just a few months ago with my crash. Friends asked what I might need, and I told them honestly that I didn’t know. Had Robot and Eric not set up the beer fund, there’s a lot of love out there that people would not have found a way to express. The genius of the beer fund was its simplicity—buy a guy a beer. That it wasn’t my idea made it easier to accept. There’s an odd dynamic at work in crisis; I can say this is true for me, but I suspect it is also true for a great many people. When the glue melts, very few of us are against assistance. What is far more challenging is articulating what we need. Certainly, I have seen friends who can marshal the forces and get their house cleaned, fridge filled and laundry mastered. But there are those of us for whom naming a need has a difficult, two-fold effect.
In cycling, rendering aid is easy to do. If a rider is falling off the pace, you pull ahead, give them your draft and close the gap. If a rider crashes, you render first aid. If the pace is meant to be hard but output drops, you go to the front for one more pull. If your friend’s bottles are empty, you share yours. None of this requires a request or a response. This is the unwritten etiquette of the peloton. I don’t mind admitting that cycling taught me these lessons in concrete ways, that prior to cycling I’d been too much of a lone wolf to really understand the social contract.
If only real life were as easy.
Putting a name to what you need means acknowledging that your shit is not under control. That’s tough to verbalize because it requires vulnerability. Implicit in naming that need is a kind of request as well. Even if the help was offered, where things go wrong for the helpee is that by naming something specific, it feels as if we’ve asked for something, and again, that means making ourselves vulnerable.
The real trouble is that I’ve already acknowledged more vulnerability than I’d prefer. I’ve admitted to thousands of people that I’m terrified that my son might die, that even if he doesn’t die, that he might be in for the ultimate unmaintained fire road to good health. Isn’t that enough? To ask for help is to drop yet another rung down the ladder.
Matthew is frightfully fragile even now. When we’re in the NICU, hand sanitizer punctuates each interaction. Take a picture—hand sanitizer. Touch your hair—hand sanitizer. Type an email—hand sanitizer. I look around at the other babies in his pod and they are all premies, beings of such frail composition that they don’t yet look fully human.
As to that phrase, “When we’re in the NICU,” well, it’s taken on a more conditional flavor. Our other son Philip had a runny nose for half an hour or so on Sunday afternoon and now Shana, her mom and I all have some virus that prevents us from visiting Matthew. It’s not just not visiting Matthew, either. It’s that we accept that to step foot into the NICU would put every child, every doctor, every nurse and every staff member, not to mention every other parent there, at risk. I love my son and want to see him, but going to the hospital is a level of selfish that’s just unconscionable.
Each day of not seeing Matthew is excruciating; never have I loved anything so new with such abandon—college girlfriends included.
Of all the qualities I admire in other people, grace is the one that most consistently leaves me in awe. I think that’s due to how slow I am to recognize it. Grace is a souplesse of the soul, an effortlessness of self that makes interacting with some people a kind of endless joy. Those are people who make me feel better about being me. It’s the rarest of gifts. I think that if I had their grace I would know how to accept help in a way that gave me what I most need while allowing them the opportunity to show some love.
And that’s what this is about. The offer of help is just a matter of people showing that they care. They want the chance to stand up and be counted. Helping out new parents is part of the brotherhood into which all parents have been initiated. Not to answer is a kind of “no” and declining the offer of help is tantamount to telling someone you don’t respect their path as a parent. To find that I’d done that, even accidentally, would be as painful as insulting my mother.
Recently some friends said, ‘Here’s what we’re going to do: We’re going to bring you lunch on Saturday. What would you like?’ It turns out that was easier to answer. I offer this as a kind of apology for all those who have reached out with an offer of assistance—I’m not unwilling to accept aid, but articulating a need is like talking about the future when all the verbs you have are present-tense.
Allow me to breathe some life into a dog-eared cliché: It’s not you; it’s me.
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.