Enter The Deuce, Part VIII
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.
Enter the Deuce, Part VII
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.
Enter The Deuce, Part V
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.
Enter The Deuce, Part IV
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.
