Enter The Deuce: Part VI

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Nature does not abide the straight line. Perfection in nature is rare and what it looks like can be surprising. Imperfections can be just as hard to recognize; often hidden by what we expect to see, what seems normal, they can be the most mundane of details. So while in a straight line we see consistency, constancy, the absence of error, a mathematical precision that suggests a kind of mastery to please the human mind by reassuring us and banishing fears, nature takes its own course, one where the route might be no less imperative, but a path without the arrogance to pass all things undisturbed.

When the housing market took off in the early 2000s, a friend laughed at me for putting what little money I had into a magazine, when—of course—any sane person would buy a house. And if they already had a house, they’d buy another. There can be little doubt it would have been a better use of my money but when my interest rate would have shot through the roof and I couldn’t afford to pay my mortgage—something I considered so distinct a possibility I refused a loan I was offered—as it turns out, I would have been able to keep my house because other tax payers would have been forced to rescue me from my bad judgement. It turns out that my responsible judgement was worse than everyone else’s bad judgement. Who knew? The point being that as he and other friends laughed at me for missing out on what everyone was saying was going to be a permanent escalation in real estate values for all time with prices gaining double digits annually until the sun burned up all its hydrogen. That whole linear function thingy.

Only it didn’t play out that way. But because so many people banked on exactly that impossible scenario (among other factors) our economy still hasn’t recovered.

The Deuce is now a corollary to that fundamental truth. Based on the confusing, incomplete and occasionally contradictory information we’re getting from the doctors, our son either hasn’t improved in a week or he’s worse. Or maybe something else entirely. We’re not sure. But my mind keeps going back to the dissatisfaction I experienced with the housing bubble because though I wasn’t rewarded for good judgement, I knew the market wouldn’t continue to go up, that the bubble would burst, that there would be hell to pay for all those people who bet the farm on a linear function.

What ought to be giving me smug satisfaction right now is just a source of irritation. I knew that the Deuce wouldn’t get better every day until finally he’d go home. But what is really hard to deal with is knowing that he may or may not have gotten any better for a week, but we really can’t be sure because doctors waited six freaking days to decide to inspect his chest tube that was draining no fluid.

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.

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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.

In my previous discussions with the doctors I made it clear that they had my trust. I made it clear that all I asked was clear and frequent communication based on the facts. In those circumstances in which we didn’t have a complete set of facts, talk to me about statistics and percentages, what was most likely to play out. I know that no one sinks the 8-ball on their opening shot. Just tell me how many shots are likely to elapse before someone calls “corner pocket.”

Don’t bullshit me. Ever.

The request I didn’t make because I didn’t think I needed to make it was, “Stay on top of your patient.” Okay, so that’s not a request, but I could have asked, “Would you please stay on top of your patient?” I’ve received a great many nice notes from medical professionals and regular folks like me who encouraged me to stay chill and let the docs do their thing.

Which I did. I stayed chill.

And what did they do? Well, I’m not sure, but it wasn’t “their thing.” I consider “their thing” to include getting any and all stray fluid out of my son. If his primary problem is fluid leaking from his thoracic duct into his chest and thereby compressing his right lung so that he can’t breathe properly, then they should do their shit and get the fluid out. Proto, or in their terms, STAT.

Look, if this was a carwash and someone missed hitting my tires with the Armor-All, it would be no biggie. My tires aren’t going to go flat. I’m not going to lose control of the car in a turn. My gas mileage isn’t going to fall to M1 Abrams.

But this ain’t Armor-All. This is a rare and otherwise fatal condition in my son. My son who is relying on their skill and know-how to hopefully one-day leave the NICU and move to Redondo Beach. For him to go home, he needs to be well. For him to be well he must improve. For him to improve, he needs optimal treatment, that may or may not include surgery. But we can’t know exactly what treatment he needs if his doctors don’t really know what’s going on with him. And I’m sorry, but if you’ve taken five days to decide to pull out a chest tube that hasn’t removed any fluid from his body to the little measuring receptacle because it is clogged with some sort of puss-like gunk, then I think I have a right to tell you to your face that you aren’t operating with a full set of facts. And if you aren’t really operating with a full set of facts, but those facts are there to be gathered—all they needed to do was pull that tube out to know—then you aren’t really doing your job. That’s an important detail and I have a right to ask why and receive a straight answer.

Look, if I show up for a hilly bike race with a cassette meant for the flats because I didn’t bother to read the course description or look at the course profile, and I have trouble getting up the climbs because I’m over-geared, that’s my fault and I deserve to have my ass handed to me. There was data. I could have made decisions based on it. I didn’t do my due diligence.

My understanding is that once my son has been here 30 days, he will be evaluated for progress. That seems reasonable. However, if his progress depends on treatment that requires a complete set of facts, it’s unacceptable to spend 20 percent of that time wondering why fluid isn’t draining out of him.

Changing a chest tube is no picnic. If Maslow had a hierarchy of discomfort, this would rank way higher than, say, a bagel cut or road rash. You’d rather have the stomach flu than a chest tube. And you’d rather have a colonoscopy than have someone remove or insert a chest tube. But that’s no reason not to do it. Matthew was on a witches brew of drugs yesterday after they did, finally, change his test tube. Dr. Drew Pinsky has made a career out of treating people who think the cocktail Matthew was on—Phenobarbital, Lidocaine, Lorazepam and Naloxone—would make for the ultimate party. He slept the entire afternoon and evening.

We’re three weeks in and our reality is one I struggle to accept. The Deuce’s nurses know him and his preferences better than we do. I hate that. Having a nurse tell me what my son likes makes me feel like the most absentee dad since … I dunno, name the father of some mass-murderer. Most days, I feel like I’m the parent of one-and-a-half kids, if even that.

I learned that a friend of my wife’s used Matthew as motivation while she ran a half marathon last weekend. She said that every time she faltered, she thought of him and that gave her strength. That a little guy who can’t survive outside an isolette can inspire someone to run 13.1 miles is one of those outcomes no one could guess. Finding out that the Deuce could give someone strength even as his situation robbed us of ours humbled me to my core. I felt as if someone else was experiencing more love for him than I was, and in that I was both embarrassed and filled with hope. If that’s not a fresh take on Keats’ notion of negative capability, I don’t know what is.

 

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25 comments

  1. Bikelink

    1st half: seemingly contradictory evaluations could be different people saying the same thing…I see this all the time. In that scenario if those people were in the same room they would agree with what each other were saying. Sometimes we have group meetings with the multiple specialists to make sure we’re all on the same page. If that seems to be the situation you could ask that they have a ‘family meeting’ with the different players to make sure they all are on the same page and that you know what that page is.

    2nd half: don’t know what to make of that…magical thinking that another day it would restart draining? I work with adult patients but having family members asking “why is this happening? why is that happening” until they get answers that actually make sense to them sometimes uncovers potential mistakes/lapses. Doctors (and nurses, etc) should be able to explain answers to you that make sense, which may or may not include: “I’m sorry in retrospect we should have changed the tube earlier..I was hoping we wouldn’t have to” or something like that. There is a balance between trusting the medical care (you can’t know enough to make all the decisions) and getting explanations for things going on that make sense to an intelligent person who is not a medical professional.

  2. todd k

    Hey there Padraig,

    Sorry you are going through such a mess with this crap. From one father to another, though, you are doing a great job at being your son’s advocate. Trust your judgement and if occaisionally the staff get a bit “put off” by your posing questions with an expectation for clear answers or asking questions that may have obvious answers to them that are not obvious to you, or calling them to attention when it seems like an approach just doesnt make sense–remind them you are the one speaking for the patient and they should expect you to do that job.

  3. Hoshie99

    Hi,

    Well, I’d like to say that your disappointment in the medical community is a rare occurence, that trust is paramount. But as the son of a pharma company VP (who contracted a horrible fatal disease later in life) and having more than a few doctors in the family, I can tell you that you are better off to “trust but verify.”

    Your job, if you don’t mind me saying, is to be the advocate, the squeaky wheel, and the road captain for this race.

    Don’t be passive, be polite, but don’t in any way mistake the fact that no one will care as much as you do.

    Hospitals are large institutions and the quality bar of staff can vary wildly. They also are run by people who have many patients in crisis at any one time.

    So, hence the need to advocate and be curious – ask why. And if you don’t like what you are seeing, get second opinions or external support.

    I sense your frustration from yout post and I understand. My advice is all I can give you in return. I hope it’s valuable.

    Best of luck.

    J

  4. Luis Oliveira

    To be sure, The Deuce is an inspiration. And so are you.

    Please, consider that anything that I could say or do that would help you in any way has been said or done.

  5. Pat O'Brien

    On the house thing, the banks and investors got bailed out, most mortgage holders got little to no help, even now.

    You have every right to be pissed off. I would have expected the nurses to alert the doctors that common sense says the tube might be clogged. I assume it is a big deal to remove, inspect or replace, and re-insert the tube based on your description. That can be the only excuse to wait six days, and a weak one at that. Maybe your best bet is to start your conversations with the nurses, then move on to the doctors. What ever you do, don’t go to the shoulda, woulda, coulda thinking. Like you said in your last post, there will be chaos, keep pedaling, and have an extra Guinness tonight.

  6. BRADYHALE

    All I can think of is that in spite of the Doctors F/U’s the little guy is still in there fighting as hard as ever. God love him cause Grandma & Gramdpa sure do…

  7. Mike G

    As a father I know better than to think that I could possibly type anything new or that would be any better than “hang in there”.

    One day in… oh, 20 years or so, I hope that the Deuce will have access to these posts of yours from the earliest days of his life and, upon reading them, will be able to truly appreciate exactly to what degree his old man had his shit together AND was able to hold it so in the most trying of circumstances. Keep pedaling indeed, sir.

  8. N. Peter Armitage

    Hoshie99 has it right on…

    >Your job, if you don’t mind me saying, is to be the advocate, the squeaky
    >wheel, and the road captain for this race.

    >Don’t be passive, be polite, but don’t in any way mistake the fact that no
    >one will care as much as you do.

    >Hospitals are large institutions and the quality bar of staff can vary
    >wildly. They also are run by people who have many patients in crisis at any
    >one time.


    1. Author
      Padraig

      Everyone: I can’t thank you enough for your continued encouragement. I’m with Hoshie99 and Mr. Armitage (nice to see you ’round these parts, sir) about exactly what my role is. That’s how I’ve conducted myself. I’ve been polite and while some agitation has shown, I’ve continued to be cordial, even as I’ve asked some very pointed questions. I didn’t mince words. I believe that Kaiser has done a very good job for the most part and I do believe in the staff, but the groupthink that led to the decision to leave the clogged chest tube in place for six days was idiotic. They had a chance to walk me through a rational set of circumstances to make sense of that and failed to do so. I’ll be more careful in the future.

  9. gmknobl

    At the great risk of saying something unnecessary, he’s your child, you push the docs however you need to give your son the best chance at survival. If the health professionals think you’re interfering they’ll let you know. But it’s better to be a nightmare of a father/mother of the patient and have your son survive than to lay back and trust they get it all right. I know doctors, in particular, love to use their trained authoritative voice to get their way. But, as humans, they also mess up quite a lot. So, be a part of the checks and balances and stay in the game. They push you, very subtly, so push them, but don’t worry overmuch on being subtle. Ultimately, he’s your two’s responsibility, not theirs. For them, if they fail, it’s a professional failure but for you and the Duece, it’s much more.

    I only say this because hindsight is 20/20.

    Had I not pushed our own doctors to look more at my son, he would have been medically compromised right now. But I did and I’m glad I did. Even so, things got to the point where he went through something no 7 year old should ever go through. Had I acted sooner, asked him more questions, it may have been better for him.

    Dear God, I hope things improve for you.

  10. Carrie Schmeck

    That all pretty much stinks. I’d be frustrated, too. Beyond frustrated. No words will help. This one you just have to live. But know there are many who buffet you in your weakest moments.

  11. Savvycyclist

    “I am dissatisfied with the care my son is getting at this hospital. Do you have a ombudsman or other method to discuss my concerns?” “Should I consider moving my son to another facility better equipped to provide the level of care he requires?” “Do you have any objection to bringing in someone with greater experience or a better success rate for a second opinion?”

  12. Jesus from Cancun

    Padraig: I am the son of a retired neonatologist, and my own younger son spent the first week of his life in the hospital with a team of doctors trying to figure out why his bilirubin was so high that he was yellow like the Simpsons.
    Thankfully, they worked it out and now it is something we laugh about.

    I am faithfully stopping by to keep track of Mathew’s progress, always hoping to read “The Deuce is finally home…” I have been touched by many of the readers’ comments. Today Mike G’s commet gave me goosebumps.

    Like many, here I am sending you and your family the best wishes. Bike talk can wait. Some things are more important in life, and I admire you for sharing this very personal, very sensitive part of you life with your readership.

    Animo, Padraig!!

  13. Dave Cieslowski

    Padraig,

    Hoshie99 speaks the truth. Like I wrote in one of my earlier posts, one of the worst parts of all of this is the physical and emotional energy you and your wife will have to expend advocating for your son. My son was taken off O2 too soon while in the NICU, and even though he was ashen grey and less alert, the doc thought he was “fine”. At the time, they did not have a sensor on him. This went on for three days before I demanded that they put the monitor back on. Low and behold, he was satting at 70! No one cares more than you and the squeaky wheel does get the oil. Being respectful is important, but asking for explanations and demanding updates on plan of care etc. is so important. Like you, I felt like we got great care from our docs and nurses 95% of the time. Unfortunately, the other 5% of the time in the NICU has serious consequences. Hang in there!

  14. Jeremy

    Padraig,
    I feel as though I must apologize, as I know I was one who asked that you trust in the doctors and staff to help your child. My wife and I have been through very similar situations (more than once) since our son was born and in the NICU (20 months ago). I am fortunate that my wife has the most phenomenal intuition that exists, and she has an uncanny ability to know when something is not right with her boy. She’s also not afraid to question or speak up to the doctors. I tend to be more complacent (to a fault).

    You are your son’s best advocate. he is on your mind 24 hours a day, and you watch him with an interest unlike any doctor or nurse. If you feel something is out of the ordinary then fight to make sure it is addressed to a point you are satisfied.

    God bless. The Deuce is in my prayers.

  15. P Poppenjay

    I hold with everyone who has responded to you. I am in a state of disbelief regarding the Doctors and their being so late to Deuce’s needs. Actually, have found myself speechless.
    I support whatever you find you must do for Deuce.
    From here, I pray that God hovers over him and his team.
    Also, of course you and Mommie.

  16. Michael

    Hey Padraig,

    I am a science professor. I never had any thought or desire to be a medical doctor, but I see the proto-physicians in my classes. Some are great and interested in all subjects – mentally alive! Some are there to get good grades at whatever cost, so they can get into med school. I bear that in mind when my daughter is in the hospital – physicians are of varying intellects and mind sets. FInd the ones who are mentally alive and get them interested in the puzzle that is your child, and then have them vet the data with you, explaining it as they go. The ones who want good grades won’t be bothered, and your child will benefit.

  17. LesB

    ” thick, pussy gunk.”

    That’s it?

    Presumably, (dare I presume!) by now they have had lab tests done on the stuff so that they have a more technical knowledge of what it is!

    If not, something for you to campaign for.

  18. pommes

    Many hospital workers are systematicaly overworked, tired and trained not to care too much about their patients conditions. Dont be afraid to be assertive with them. As stated above, the squeaky wheel gets the oil.

    Be a huge pain in their neck. Call them frequently. Raise your voice. Hover over the nurses station. They’ll get the picture. But alsi be sure to smile, bring them coffee &/or chocolate and thank them, too. You need them to do their best work.

  19. Marion

    Patrick,
    You are your son’s advocate… Tell your primary “no more students, fellows, etc” After working in, and
    being a patient, Keep to your guns! I have worked in healthcare for 30+ years and have witnessed many instances where incompetant care was provided for the sake of learning…

  20. Bobbo

    Patrick,
    What Marion said. Watch the doctors and nurses like a hawk. Question what they are doing and why they are doing it. If they are not doing right by your son, their patient, you need to get RED about it. Not raving, but damned insistent and persistent and let them know you will not be trifled with. And yes, ABSOLUTELY NO RESIDENTS OR FELLOWS. ATTENDINGS ONLY. Insist on this or let them know you will have a conversation with the head of service and it will not be a pleasant conversation. I will keep you and your son in my prayers.


    1. Author
      Padraig

      I’m sorry I haven’t been able to keep up with comments like normal. I want everyone to know that this isn’t a teaching hospital and we haven’t had to worry about medical students or residents. The doctors and nurses have really been pretty terrific.

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