Enter The Deuce, Part II

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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.

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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.

 

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26 comments

  1. LesB

    I’m not clear that you’re not doing anything to increase the quality of the care the Deuce is receiving.

    His emotional state, as with any medical patient, is vitally important. He can sense your continued presence, and that has to very huge.

    It used to be the thought that infants were living blobs of tissue with no thinking ability or emotions. Quite the opposite has been found to be true; plus infants haven’t been enculturated to the point that they supress their instincts, as we are wont to do in post-primitive societies. He can probably sense his father’s presence.

    What I’m stumbling here to say is that I can only believe that your loving presence in his life is very significant and is increasing his quality of care and his quality of life, and will affect him for the rest of his life.

    Love is what it’s all about.

    He’s really cute with that full head of red-ish hair!

  2. scaredskinnydog

    Your a stud Padraig! Any kid with a Dad like you is going to turn out fine. Hang in there and keep up the good work!

  3. Patrick O'Brien

    We rode this morning. Going down the road I visualized that duct finishing its growth, closing up, and flowing normally. I also saw a pair of lungs fully inflated and breathing deeply in synch with mine. Hope it worked.

  4. P Poppenjay

    LesB is wise. And absolutely correct.
    In your last two paragraphs, Padraig, you eloquently explain your mission, your gifts, to Deuce. He will prosper. With you for his Dad, how could he not?

  5. noel

    soon enough you’ll be writing about his preference for campy and handmade bikes and his disdain for big box units for their bland excellence. and when this happens i’ll remind of of his perilous beginnings and excellent taste.

  6. Bikelink

    Hi Padraig. I’m a physician and the father of an 8-year old. What most parents learn and what you probably already know is what’s right for you to do and for your family is whatever you and your spouse think is right..nothing else matters much. Our son spent and extra two days in the hospital…nothing compared to what you are going through, and that was devastating to my wife at the time (she recovered as soon as we got home). I noticed that there weren’t a lot of other fathers around much….well, that didn’t affect what I did. When days turn into weeks though yeah you’ve got to do other things too for your own sanity. If you’re going nuts then you being there doesn’t help…riding and doing your own thing in that sense is what you need to do sometimes for your yourself and therefore for your family. The medical world is confusing and scary but there are many good folks in there who want to help Deuce get out of there as fast and safely as he can.

  7. Michael

    Having spent too many nights by my daughter’s bed in a hospital and having a different last name from her (and my wife), I understand the “your relationship to her is..?” question and your reaction well. The good news is that you are a weirdo in their system, and sometimes you can use that to get the doctors or nurses to level with you about your child’s situation. Also, you may meet a male pediatric nurse and make a good friend based on your shared otherness. I did – he lives around the corner and has become a champion for my daughter.

  8. August Cole

    You’re giving him a world where your love and strength will unleash his potential. The best elements of our nature, discovered through competition, training or the weekly embrace of a peloton, await him on the bike and in his family’s arms. And that family grows with every word you write. Courage!

  9. Tom in albany

    “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.”

    You flat nailed it. Sounds to me like Philip (The Ace?) and Matthew (The Deuce) have a great dad!

    For some parents, taking care your yourself is really hard. For others, it’s far too easy. What a life!

  10. Chris in Iowa

    Went through something similar almost 13 years ago with my daughter. 30 days in NICU, any time you can spend holding, comforting, feeding, etc. is the best investment you can make period. You are absolutely doing the right things. Don’t ever doubt yourself on this one. It seems like an eternity now but you will persevere, we are dads after all.

  11. Dave O

    What an incredible essay, what powerful and moving words. I can say nothing other than I feel lucky to have had the chance to read these words… My thoughts and prayers are with you and your family for a successful/full outcome.

  12. Andy

    Keep up the good work! When we were confronted with our grandson’s near-fatal stroke & subsequent near-fatal surgery to remove (most of) his brain tumor, “just give us a happy kid!” was a family mantra. You would do well to learn from my daughter’s experience:
    1. Never give up!
    2. Ask all the questions you need to and ask them till you get answers you can understand & relate to.
    3. Seek balance, and involve all the family to the extent your judgement says so.
    4. See #1.
    5. See #1.

    You are deeply caring folks – that’s the best offense.

    Peace.

  13. BRADYHALE

    The Deuce and I were chatting this morning (we do this quite often) and I was telling him how proud we all are because he is such a tiny little fighter. I then told him how much we love him.

    The Deuce then said: ‘know what Grandpa… if you’re going to be a bear you might as well be a grizzly!”

    You are my boy… you are…

  14. Hautacam

    You the man, Padraig. Matthew and Philip are lucky to have a such great, involved dad.

    Hup hup, brother. We are ringing the cowbells for you and yours.

  15. Pingback: Metro supports your right to the road, PCH cyclist beaten in Malibu, $25k reward for hit-and-run driver | BikingInLA

  16. Jeff A

    Hang in there sir..
    Thoughts and prayers to you and family
    I’m an aspiring Peds Nurse, and your encouraging, uplifting words are not just helping you, and your readers, but me also.

    Been an avid reader of your site for several years, and owe a debt of gratitude for yours and Mr. o’grady’s amazing text, turn by turn, mile by mile , and picturesque description of each stage of each grand tour since summer 2010, when I “discovered” the beauty of cycling (also, the great tip from you both on riding Pacific coast hwy that my Bro and I rode last summer, best chillax ride).

    Never stop believing

  17. Dan O

    Hang in there. As a father of two, could only imagine what you’re going through. Hopefully in a few years, all this will be just a fuzzy memory, healthy son at your side.

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