Enter The Deuce, Part VIII

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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.

 

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30 comments

  1. Brian Hidy

    “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.”

    I found this pretty profound, yet totally inaccurate for me personally since I think I won’t forget this for quite sometime. Your writing has always been pretty moving, but this ‘series’ has me (as well as I’m sure many other readers and certainly your friends) captivated.

    You and your family (especially ‘The Deuce’) are sincerely in my thoughts and prayers.

  2. Wisco

    Progress for tiny patients will be measured in tiny steps. Keep talking to your young son and tell him that you love him at every possible moment. We all continue to provide whatever long-distance support we can. I may never meet you in person, but I am your friend.

  3. Jeremy

    My heart is with you. I have been through that situation too many times in the last two years and it never gets easier.

    I wish the best for The Deuce and eagerly await your next update.

  4. todd k

    Given the information, I think your surgeon was shooting straight with you and you absolutely made the right call. Doing nothing wasn’t really an option. Scary calls to make, and it sucks to have to make them, but you have to make them. And better you make them, then the decisions make themselves for you and you second guess being too passive. Having read through this the past few weeks, you’re making sound logical decisions that are niether rash nor overly hesitant and the Deuce is getting the best possible choices made for him as a result. I don’t have any magic words here, but hang in there! Hope the mom is holding up well too!

  5. Alan Cline

    Patrick-

    I had to carry my son into surgery when he was two years old. It was a common procedure, as safe as they get I was told, but as he faded into the land of anesthesia and tubes were inserted and he began frothing at the mouth, I literally felt my knees buckle and the world began to spin. I got back to my wife and broke down. The upside is it worked and I have faith that you guys and the deuce are going to pull through this and years down the road that tough little guy won’t be so little and he’ll drop back on a tough climb to see how his old man is doing and say “Dad, tell me that story again about when I was a baby…”

  6. Sabina

    Courage is not something that you feel… it is in actual fact a verb, something that you DO. Brave is not an emotion; it is a steadiness in the face of swirling fear and confusion. What you both are doing and enduring for your son is heroic. Lucky boy.

  7. MCH

    I hope the little guy, you, and Shana (and Philip too!) are resting well. Rest assured that you made the best possible decision given the very difficult circumstances. Our hearts are with you.

  8. Maremma Mark

    Half a world away and I can feel my heart beat faster as I try and put myself in your shoes. I wish I could help share your burden.

    I took comfort in Alan’s words; years from now on a hard ride after you’ve been suffering on the Deuce’s wheel for miles, he’ll ease off when he notices how grey you’ve become. And to help you regain your composure, he’ll ask to hear the story again, of how difficult his first month on earth was. You won’t have any trouble spinning it out for many long minutes as your body slowly begins to recover, till both of you sit up and freewheel to look at each other in one of those moments for which there are no words.

    God’s speed.

  9. CAL

    One more hill crested. I’ve appreciated your sharing with us readers your thoughts and feelings about life and family (on the bike and off) and most recently about Matthew. He’s beautiful and now hopefully recovery and home are mere days away. As a pediatric anesthesiologist I have only isolated glimpses into the lives of my patients’ families.Your continued narrative has inspired me to be even more thoughtful about/to more than just the infant/child entrusted to my care. RKP has certainly created a community. Thank you for allowing me/us to be part of it and your own personal one. Blessings for Matthew!

  10. Bin

    Something you said resonated. About decisions that only come back during private moments.

    Our second son had surgery at about 3 weeks of age. That was a long time ago. I don’t often try to relive how I felt as I held him before he was taken to the operating room. It’s very powerful, those feelings.

    Our challenges are different with him now, like finding a frame big enough for all of his 6’8″ and whether he wears his helmet when he is riding with someone other than me. Best wishes for the same problems with the Deuce.

  11. Luis Oliveira

    Can’t really help you in any way, can only repeat your own mantra back: keep paddling.

    If writing things and thoughts down is how you make sense of things, I can only compliment you on your clarity. Few times if seen such straight reasoning.

  12. Emil

    Each in this series tugs at my heart. I truly feel for you and your family and wish the best for the Deuce. I trust we will soon see pictures of him at home in the arms of his family.

  13. Jeremiah

    I showed my 10 month old boy a picture of Matthew on my phone and told him a little of his story. He paid attention as much as a 10 month old boy could. But when he saw the zoomed-in picture on my phone he gave me a smile. A smile that I liked. I don’t know what was going though his little mind. Did he think it was him? Did he think it was a mirror? Did he see the tubes going into Matthews nose? Could he feel for Matthew’s situation?

    I read your re-post of the article https://www.commondreams.org/view/2013/03/19-8 and really took it to heart. I have an obligation to raise my son to be a kind man and I will follow through with that.

    Could little Teagan feel for the even littler Matthew? Could he want to try to make him feel better? I like to think so. If he doesn’t now he will soon.

    Take care Patrick

  14. Kevin McD

    Continued best wishes for you and your family. I know many have offered before, but please let us know how we can be of help from afar.

  15. Andrew

    I think you’ve made the right decision, and things will start to improve now. I really hope so. Our thoughts are with you all.

  16. Walter Nash

    It is amazing that you are able to write these words in the face of the emotional roller coaster that you and your family are on. Anyone with a child can understand the gut wrenching, powerless feelings you are going through.

    There are a lot of prayers and thoughts going out to your son and your family.

  17. Travis

    I’m sitting in bed with my wife reading this and shedding a happy tear that the Deuce pulled through the surgery. You and your family have been amazing and strong thus far, with no signs of letting up. Just remember to remind the deuce to take it easy on you when he’s older and charging up climbs in the big ring. Tell him, how much you suffered and maybe, just maybe he’ll take it easy on his old man. ;)

  18. Cris

    For the past few weeks, every time I click on the bookmark for this site, I hold my breath.

    Stay strong, Matthew.

    Padraig, you and yours are in our thoughts.

    Cris

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