Patrick Brady writes at “Red Kite Prayer” on cycling and related topics. His blog took a very personal turn in February of 2013 with a post entitled “Any Normal Person.” In reading the series I was reminded of a remark Irwin Federman made to MMI employees when were using four day work weeks (actually five days work for four days pay): “We trust you to do the right thing. God has given you so much more responsibility as parents how can we not trust you.
Before Brady and his wife had agreed on a name for their second child they nicknamed him “Deuce.” As a way of processing what as happening Brady wrote down his thoughts and decided to publish them the same day in what he referred to a the “Enter the Deuce Series” I found it very compelling and insightful reading, what follows are some key excerpts from many of the pieces interspersed with my own observations
Any Normal Person An ultrasound was performed that revealed a problem with our baby. It might not turn out to be a big deal, but it could turn out to be an indicator of a profound disability. The doctors scheduled her labor to be induced Thursday night with an anticipated delivery on Friday, when all the specialists would be easily at hand.
Second children are less scary, you have been through everything before and you have some experience with what you expect to face.
Enter the Deuce Part 1: Without intervention, our son would code. I was watching what the death of a newborn looks like. I was watching our son die.
The delivery team knew what to expect and understood that the newborn could not breathe on his own. A place had been reserved in the newborn ICU (NICU). Without ultrasound they would not have know what they were facing.
Part 2: 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.
It’s a risk to be aware of: processing the emotional significance of outcomes can overwhelm your ability to process the novel complexity of an unfolding situation. I used to be more frustrated with doctors until I understood they were trying to intervene in very complex systems (human bodies) where outcomes are really matters of life and death. A project slip or a lost job pale in severity to a dead child.
Part 2: We’re told that this usually resolves itself over a number of weeks. 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.
Probabilities are used to model your current state of information. You don’t have to like the odds to understand the real risks you are facing and plan accordingly. The challenge at this stage is that there is no action to take beyond watchful waiting.
Part 3: Beyond the love of family, my life has taught me that nearly everything is up for grabs. From where I live to how I earn my living, any of that can change, and sometimes as quickly as a snowflake melts. A pilot friend of mine likes to say that such a view of the world teaches you “situational awareness.” Answers change from day to day, moment to moment. […] I offer this as a kind of apology for all those who have reached out with an offer of assistance—I’m not unwilling to accept aid, but articulating a need is like talking about the future when all the verbs you have are present-tense.
You cannot live in a heightened state of awareness for days on end. At some point you need to take a break if only to avoid burning out in high idle.
Part 4: The distance he has covered since he was admitted is enormous. Doctors plan to end the Octreotide treatment soon. […] 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 enormity of what we’re facing comes back in odd and surprising ways. 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?
I can remember a friend of the family reassuring us that he was “only in stage four” and having his daughter explode after he left the room saying, “he keeps saying that but there is no stage 5, the next stage is death.” In this case one thing he could ask for is help getting information on the condition and the surgical options. Someone will know someone who can provide context or at least better questions to ask. I have been amazed at the insights you can access if you clearly have a need to make a tough decision.
Part 5: The text was simple enough: “Call me when u can”. 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?” 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. 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.
At this point they are headed for surgery. Sometimes you are down to your last option and you have to take it. But it’s hard to remain purely rational when the stakes are so high.
There Will Be Moments of Chaos: Some good advice I once got when preparing for a team time trial: “There will be moments of chaos, keep pedaling.” The advice to keep pedaling is comprised of layer upon layer of wisdom. In it, there’s the simple physics of a bicycle, that under power your weight will be centered and the bike will handle better, that if you’re not slowing down, the gyroscopic effect of the wheels spinning means you’re more apt to stay upright—even if you are bumped. There’s the reality of bike racing, that the worst expression of chaos is a crash and if you are pedaling then you’re probably not crashing. Another great truth buried in this little koan is that bike racing is, at its very core, chaotic. If you are to make peace with bike racing, then you need to make peace with chaos. In the last few weeks, I’ve been thinking about that quote the way I like to think about my favorite quote by William Faulkner: “I never know what I think about something until I read what I’ve written on it.
I think the idea of keeping a log in a difficult situation is a good one. You don’t have to publish it during or after but it can allow you to organize your thoughts and be used to supplemental a memory that may be affected by the stress or to craft e-mails for help. The suggestion to keep putting one foot in front of the other is also a good one. At this point once his son was born with the problem they can only go forward from where they are there is no retreat to a last safe place.
Part 6: Six days ago they told us there was fluid in his chest. Six days ago they told us the fluid wasn’t draining. Six days ago they told us they weren’t sure why the fluid wasn’t draining. Six days ago they admitted the tube might be clogged. Yesterday, I repeat, yesterday, they pulled the tube out only to discover that—lo!—all three openings in the chest tube were clogged with a thick, pussy gunk.
It’s painful to change a chest tube. In hindsight one thing to do is to ask when they will make a different decision if their state of information does not change and the situation just gets older. So on the first day he could have asked: how many days would you let it go without drainage before changing the tube. It’s also reasonable to ask experts to predict one more ahead: what are the likely outcomes from this decision and how do you plan to manage each of them. You cannot plan too far ahead but it’s reasonable to plan at least one step ahead and to plan when you will take action in the event things don’t change and time passes.
Part 7: 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. The call never came.
The uncertainty is more wearing than anything else. Here you can set your own series of timeouts for when and how to escalate in the absence of a call and then relax until the next decision point. Easy to say, hard to do but the alternative is the continually re-run and re-calculate what may have gone wrong with no change in your state of information.
Part 8: 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? […] 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. 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.”
One thing to while you are waiting to talk to an expert is to write down the questions you have and a complete description of the situation from your perspective so that everyone can start on the same page. You can then hand that to the expert to read at the start of the conversation. This is not a bad protocol for conversations with any medical specialist but also works for attorneys, accountants, and other experts.
Part 8: The doctor 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.”
One of the hallmarks of expertise is the ability to digest a complex situation rapidly and boil it down to the critical state and decision variables. Shunryu Suzuki expressed this as: “In the beginner’s mind there are many possibilities, but in the expert’s there are few.” It’s a good indication that they are working with an expert that they get a clear explanation that does not resort to jargon or trust me.
Part 8: 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.
If possible it’s better to sleep or relax when you are waiting so you have some rest to face whatever unfolds next. A friend told me a follow up visit to a doctor to scan his body to make sure his cancer was still in remission. They had called him back to take a second chest X-Ray and he was convinced they were just making sure that it had returned. After a long wait he was ushered back into the doctor’s office to discuss what they had learned. When the doctor said, “You’re clear” my friend threw up into the wastebasket because the sense of relief was so overwhelming.
Part 9: I’ve been thinking about how I transitioned from forswearing surgery to grudging consideration, to rational acknowledgement that surgery was the only reasonable option for the Deuce’s recovery. I have a fair memory for things my mouth issues. One of them recently has approached the speed of mantra: “As long as we avoid surgery, we’re good.” Surgery struck me as a concession. A concession of what is hard to say, but it indicated a larger failure of less-invasive therapies. It also meant that my son wasn’t quite as strong as I’d wanted to think. This was no minor flaw if surgery was the only solution.
It’s hard to deal with things as they are but if you cannot let go of what you want the situation to be you cannot deal effectively with what it is. One of the reasons I wanted to blog about this was because of Brady’s incredible candor. And so while I also trouble dealing with things as they are–I can remember when I broke my foot and I was waiting in the ER I had the this overwhelming situation that it was all actually a dream and I was going to wake up from a nap and I would be back safe and sound at home–it’s not a bad checklist item to add to your self-debugging kit: am I dealing with things as they are or are likely to be?
Part 9: But this is a NICU. […] When Shana came downstairs to meet me and take Philip to his second park of the day, there were tears in her eyes and she told me not to go up yet. This is the NICU. Outcomes here are far from certain and today they lost a baby. It was born only yesterday and was admitted to the unit extremely hypotensive and showing signs of high acidosis. At a certain point the staff realized the baby was a lost cause and the entire extended family was admitted into the pod. Shana was with the Deuce as they wailed in the baby’s final hours. She left the Deuce’s side to give them the illusion of privacy.
This is the NICU. There will be no cheering until we get the kid in the door at home.
And so one kind of waiting has been exchanged for another: will he need surgery, will he survive surgery, will the surgery actually fix the problem, and how soon will we know?
But shortly after –and more or less uneventfully–they do get the kid in the door at home.
Here are some follow on blog posts by Brady on the aftermath of the surgery and NICU stay:
- Part 10: Matthew’s stay in the NICU is nearing the end of its fifth week. To my knowledge, he is the oldest baby present.
- Home: The Deuce is home.
- Six Months: When we found out that the Deuce had an abnormality during what was to be a final, routine, visit to the OB/GYN, I knew I needed to call my parents to tell them.
- Thanksgiving: Most days, the Deuce’s stay in the NICU is less a memory than a memory of a dream. It doesn’t seem real, but all I need to prove just how real it was—and remains—is to look at one of his scars.
- Enter the Deuce–One Year: I knew this day was coming. I was even looking forward to it, for marking a year is how we celebrate endurance. So we’re going to have a bit of a birthday party for His Tininess the Deuce this Saturday.
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