Enter The Deuce, Part IV

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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?

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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.

 

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25 comments

  1. Jeremy

    My son required a surgery just two weeks in to his fragile life. What we found was that the doctors would never give us too much advance information. We assumed this was two fold. 1) Their time is valuable and limited and they can’t afford to run through every “possible” option in detail with every parent. They would be consumed with “what-ifs”. 2) They do not want to add unneeded stress and worry to already fragile parents over a procedure that may never be needed.

    Be an advocate for your little man, but also trust that they’ve done this before.

  2. Ron Callahan

    Sounds like things are moving in the right direction. You are handling this in the best way you can.

    All of this makes what we went through with my daughter seem inconsequential.

    And furthermore, know that RKP will take care of itself. Anyone that visits the site with any regularity will know what’s going on and I’m sure that they’ll understand a late order or unanswered e-mail for a while.

    I know that you’ve had plenty of offers of help and have already posted about that, but if you need any help with the site, let me know.

  3. Walter

    Padraig,
    Thanks for sharing, and continuing to share. Thought I’d share the following, as it relates to “we don’t know how this drug works”: my wife is a cancer survivor (in fact, that’s how I got into cycling — there’s a charity ride supporting her oncologist’s hospital http://www.pmc.org), and I can’t tell you how often I heard that exact statement, and how startling it was at first. (In fairness, not about the chemo, but on just about everything else that went into her body.) Anyway, it does appear that the stuff mostly works even if we don’t know how or why, and I’m happy to say that she’s doing well 8 years later.

    Our thoughts are with you — hang in there!

  4. scaredskinnydog

    What a handsome little dude. Everytime I look at that picture it melts my heart. For the next few days I’m concentrating my energy on one thought. The A pod.

  5. Mo'Nilla

    They keep you on a need to know basis in order to not add to your already overly substantial collection of worst-case scenarios. The Deuce is doing great and you all are going to be OK.
    PS: Here’s a gag all the docs just LOVE- Preface every conversation with, “You know, I was just reading WebMD and they said…”:^O

  6. Travis

    It has been heart wrenching and heart warming to read your posts regarding The Deuce. I am so happy for your family that things are progressing in a positive direction. Our thoughts are with you and your family and we hope this passes soon and you can just be thinkijg of what his first bike will be.

  7. John

    Keep posting, which I hope clears your head and gets your world in order at least for a moment or two. On this end, I wish the subscribers could do something to help. I hope The Deuce keeps improving. Despite the fact this is a compelling read, I hope we get to stop soon because he’s strong and healthy. Best of luck.

  8. PasoWinemaker

    “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.”
    Handsome Brady… Shana’s contribution, no doubt. ;-)

  9. PasoWinemaker

    Having finished reading the rest of post, I’m confident that Matthew (might have been named Robert, BTW) is in capable hands, and will prove to be a strong, healthy contribution to the Brady family lineage.
    You both will weather this storm and make us all proud, of this I have no doubt.
    Cheers, my friends!!!
    R~

  10. P Poppenjay

    It is incomprehensible to me that I am just now reading this.
    I do know that his Tininess the Deuce is back on the ‘O’ drug.
    I know your strength and spirit and that his Tininess is the inheritor of your strength and spirit.
    We may have a wait from H to A. The Deuce has shown to be a fighter, pulling the tube he was uncomfortable with, breathing on his own, sleeping to grow. Yes, he is a fighter! The A is coming!

  11. phxRydr

    Padraig, as a ryder whose wife is a Doc, I know first hand that your docs and those nurses want your little dude to grow up and be as strong as you are being right now. They have children and they will fight just as hard as you are to do everything in their power to send him home with his parents. Keep the faith.

  12. Michael

    When one of my twin boys was in the NICU, he was too small to be put with us in the mother and baby unit, the nurses were worse than useless. My wife is a certified RN who actually spent several years in the NICU before certing to work as an OR RN (less on-call) – this was all before I met her. Anyway as I recall the pediatrican was fine, nothing special, good or bad. But the nurses basically did things to keep Zachary in his isolet (the incubator) as long as possible. Apparently for some its a, (for lack of a better diplomatic word) ‘weird’ power trip.

    Being Canadian I don’t have to worry about fees or costs, but to my thinking that only justifies American’s being even more demanding. Get answers, until you are happy, force the damn doctors to tell the truth – often if they aren’t talking it’s becuase they don’t know. Find someone who will talk, it’s your right to know and I would say it’s your responsibility. You certainly should go in to every decsion with as much information as possible and, if you have the guts to, tell the doctors to drop the god complex, the joke about god and doctors, is so true it almost makes my wife cry.

    Good luck with the little Deuce.

  13. Tom in albany

    Glad to hear things are improving, Padraig!

    you’ve got a fighter there. He’ll be hell in a town-line sprint or a KOM Strava!

  14. Andy

    I looked at all the photos. As you so rightly point out, now there’s way less plastic, lots more kid. Things are working the way they should. When The Deuce is 30, show him your posts. It’l change his day (and yours) for the better.

  15. Mike Dublin

    Great news! Here’s hoping he continues the fight and starts leap-frogging the NICU pods all the way to his own little graduation ceremony!

    Hang in there Mom & Dad..

  16. Linda Seltzer

    Hi Patrick…. our thoughts, and prayers are with you… sounds so flimsy to say that, but we are thinking about you and wishing you all the best.
    Hang in there,
    Love
    Rob & Linda

  17. Derek

    I am with Jeremy, trust your doctors, or don’t go to them. Birth is not the same but I have had 23 orthopaedic surgeries. Plus a couple of other lovelies. I would like to thank all of the good nurses who cared for me, male and female, you are important.

  18. Scott

    Regarding your last paragraph; for every person who comments here, there are hundreds of people who wish to send the Deuce good wishes. Many of us just haven’t written it down. Your peloton is vastly greater than you imagine.
    Let’s pull for the Deuce to become an “A.”

  19. Jeremiah

    Scott is right about that. For every post I’ve read and every time I look at Facebook I’ve had a hundred thoughts & things I wanted to say but was to busy or couldn’t put my thoughts into words. I’ve emailed my wife links to RKP to read about Matthew and pray for him, I think of your precious boy often. Is it because I have a nine month old boy? Is it because we lost a baby at 13 weeks a year earlier? Is it because that baby was experiencing complications early on? I don’t know why and I guess it doesn’t really matter but little Matthew has found a place in my heart and I hope he grows up as big and strong and smart and clever as his Dad. Take care of him, yourself and the rest of your family…we’ll be waiting.


    1. Author
      Padraig

      Everyone: I can’t thank you enough for all the kind words, thoughts and prayers you’ve extended to us. And those who expressed concern about our trust for the doctors and nurses here at Kaiser, please, I didn’t mean to suggest in any way that we don’t trust them. We do. They have absolutely earned our trust and admiration.

      Also, a brief note for those of you who have voiced a desire to do something more concrete on behalf of the Deuce: First—thank you. You’re wonderfully kind. Second, please stay tuned. There’s going to be a Kickstarter campaign launching soon for a collection of my work. Accepting charity is something I’m unable to do right now, but I would love the chance strengthen our connection through a book of my work. We’ll give you a heads-up when the time is right.

  20. Paul

    Hang in there. My son spent nearly 2 months in the NICU. It was the scariest experience of my life. Surreal. The NICU staff were great…. He is now 4, riding trails with me (never used training wheels), very healthy and happy.

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