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.