Monday, September 28, 2009

What really burns

Mentioning that I was the recipient of a hot coffee burn at the drive-thru where I am a "regular" is embarrassing. Following the widely publicized case in the mid 1990's, the topic of "hot coffee burns" has been a polarizing topic. I try to stay away from issues like these, being more of a lover than a fighter in the war about what--from an evidenced-based standpoint--actually makes people safer.

But since the coffee actually fell into my lap on Saturday morning, I'll take it as a sign that I'm supposed to say something about the issue of human error and organizational response as it relates to the potential for hot liquid to spill on people who choose to purchase these products in a drive-thru.

I noticed that the lid to the cup on my coffee was slightly askew when I removed it from the drive-thru shelf where the server had placed it. I thought I could reseat it myself since the visible defect was only a 1/2" rise in what appeared to be an otherwise good seal. Unfortunately, what I would represent as gentle pressure downward on a paper cup not supported by anything except my left hand caused the cup to change shape. The lid popped off and nearly half of my large brewed coffee, with cream, hit my right thigh. It felt really bad for a few moments, the kind of bad that makes the back of your throat ache as the acute pain subsides.

The server on duty on Saturday frequently prepares my morning coffee, and the lid has always been placed correctly in the past. As I struggled to get myself back together and finish the transaction, she passed me napkins and gave me a new cup of coffee, appearing somewhat distraught. I'm thinking this is pure human error. A human will not seat a lid correctly 100% of the time. A customer may not know that the obvious corrective action of reseating a small defect will cause the cup to go askew and the coffee to spill. So I'm thinking it would be helpful for customers to know that it's safer to let the server fix a poorly seated lid than mess with it in the car. Maybe a sign in the drive-thru window saying something like, "If you notice the lid on a hot beverage is crooked, please let us fix it for you." I live in an area where a lot of people speak Spanish. So maybe the sign should be in both English and Spanish.

Since the server is a pleasant young woman and she looks kind of worried, I say to her, "I'm not interested in suing over a hot coffee spill here. But I am interested in making sure this doesn't happen to someone else." That's when she replied, "Oh, well it happens all the time. You should have seen the last lady- it was an extra hot cup of tea. We've been having trouble with these lids for awhile."

"Have you shared that with your manager?" I ask. "Oh yes," she replied. "They know all about it."

On Sunday, I return for my morning coffee. A different server is on duty. I mention the Saturday spill to her as I go through the drive-thru. I'm wondering if the cup problem is as widespread as Saturday's server had implied or if she may have felt more individually culpable than I had intended. She confirms the cups have not been performing well and that "the company" is trying to get better ones.

The red spot faded in a few hours, I have no compelling reason to revisit this issue. Except I know that by reporting a problem, reasonable people can take steps to prevent the problem from reoccurring. Customers can try to be more careful. You can hang a sign to point out risky conditions that can't be minimized in other ways. But those are low level risk-reduction strategies. Here's a more effective way to prevent burns: Cups that hold hot liquids should have lids that fit. They should be able to be manipulated into position by average workers and passed through the drive-thru window with a very low failure rate, if a business chooses to sell hot liquids in this fashion.

Sunday's cup was defect-free. And today's cup is fueling this post.

I'm just trying to help prevent someone else from getting burned.

Saturday, September 26, 2009

Trolling for patient safety in social media

People are asking lots of questions about social media (SM). More specifically, I think, we're wondering whether Facebook, Twitter, and blogs have meaning beyond what I've recently counseled my 21 year old daughter to beware of: trolling for amusement.

SM can knock on the door of its evil cousin, "addiction." It has, on occasion, claimed rather large chunks of my life in a way I failed to notice or care about while engaged. So am I a Twaddict? A Blogopath? Am I locked in to Linked-in?

Life is meant to be lived. Not mindlessly thumbing through electronic messages in hopes of finding something more interesting than what's happening where you are. So I've been reflecting about whether time spent at social networking sites can be counted as really living?

I don't know for certain that social media is "life," but I think it reflects life. More specifically, it's a barometer of culture. As a person who follows how culture in healthcare organizations impacts safety very closely, I find that SM opens a window into experiences and settings that are otherwise closed. Since you can only learn--individually and collectively--from mistakes and near-misses that you know about, I think greater transparency is among the greatest gifts SM offers the discipline of patient safety.

Here are just a few examples that captured my attention in the past few months. Since this is not a forum to fully deconstruct each event, I'm titling each to show the behavior or belief that undermines safest practice:
  • It's okay to carry things that will be injected into patients' veins in the same manner as a Bic pen: A promising young nurse shares stories about her entry into the nursing profession. One day, she photographs what she carries in her pocket. Scissors, tape, "flushes," and pens are among the things she finds helpful to store there.

  • We all have nights from hell: A seasoned intrapartum nurse describes a busy shift where she cares for multiple high-risk patients, all of whom are receiving high alert medications (those highly likely to cause harm if used in error). Staffing inadequacies and a pervasive "get 'r done" culture prevent post-procedure medication and patient monitoring. Everything turns out okay in the end.

  • Smart people don't make stupid mistakes: A resident caring for a patient receiving intraoperative dialysis takes a picture of the machine used to perform dialysis. She questions whether it's necessary to have adjunct labeling ("Dialysis Only. Do Not Drink") affixed to the front. And she asks this in a way that suggests this photo may wind up in an upcoming collection of "Darwin Awards."

People share their stories and experiences in SM venues in ways that often remove standard filters, many of which we rely on to be successful (or at least functional) in "real life." Bloggers and tweeps are not in "inspection mode," and they're not usually engaged in defensive posturing. Most accounts come from regular people, telling stories about how they take on the business of providing care. Details about obstacles faced, choices made, and opinions expressed reflect the culture of healthcare.

I saw this from Dr. Val, tweeting from a live speech by Francis Collins last week:

Collins: If you want to find a cure for cancer, you don't need to just research cancer. The answers may come from somewhere else. #RSOS.

So, too, with curing what ails healthcare.

Wednesday, September 23, 2009

Safe Practices to Safe Patients

Understanding the "science behind the compliance" of patient safety is important for a number of reasons. Here are the ones I find the most compelling:
  • When process changes are made, professionals who are impacted deserve to know why a change is occurring as well as what they are expected to do. (People don't roll out of bed to go to work and do things they perceive as useless, stupid, or burdensome simply because they're told "Joint Commission requires x, y, or z.....").
  • Healthcare is distinguished from other high-stakes endeavors (like aviation and nuclear power) by the number and complexity of distinct high-stakes processes that individual clinicians engage in each day and by the number of distinct high-stakes endeavors an individual patient is exposed to at each encounter. ("Just Do It!" doesn't "do it" for this crowd.)
  • The complexity of human beings is such that deviating from a standard approach to accommodate a physiologic, social, or cultural variation is often necessary. (This doesn't mean that standard operating procedures never work or shouldn't be used to form the scaffolding of patient care.) Since every eventuality cannot be tightly defined and scripted, teaching frontline clinicians the principles that inform safest practices allows them to recognize risk points when they must deviate for cause. Safety-knowledgeable clinicians are able to make adaptations that uphold core principles of safest system design. (This is another incarnation of the "teach them to fish" parable.)

I write a quarterly column about patient safety for Medscape, a robust continuing education platform. The most recent column, From Safe Practices to Safe Patients: The Evolution of a Revolution provides an overview of where the discipline of patient safety has come from and previews what's next.

It's an easy-read, no matter where you are along the journey.

Tuesday, September 22, 2009

Tuesday Afternoon

I've been "chasing the clouds away" here in stormy Atlanta. But there are interesting things to report from other venues, too.

First, Grand Rounds, the weekly blogging carnival is celebrating its 6th anniversary at Residency Notes. Colin Son, a first year surgical resident, is surely one of the busiest people on earth. But he's making time to continue blogging and lending support to Grand Rounds. (Maybe this is a positive outcome of taming residents' work hours?) In any event, Colin featured the list of 25 Patient Safety Tweeps today, a nice indication that "patient safety" is hitting the radar screens of young professionals.

Residencies and patient safety were in evidence in other ways this week. I picked this up in Twitter feed:

@alinahsu: U of IL: residents must report 5 unsafe conds or near misses per year in order to move on. #ahrq09

(If you're learning how to "read" tweets, this message means that someone named @alinahsu believes that at the University of Illinois, residents must report unsafe conditions and near misses as a condition of satisfactory performance and to advance during their residency years.)

I wouldn't take the contents of any one tweet to the bank, but this one is a nice indicator of positive change in healthcare's reporting culture, coming from a field reporter. Social media (things like blogs, Twitter, and Facebook) are emerging as barometers of safety culture: Busy clinicians won't write a paper about things that please or annoy them, but they will drop a line or two. Here's an on-the-fly assessment about a usability issue, this one running at the top of a blog:

"Whatever the VA paid for these tablet computers that we use to consent patients, well it was too much. These things suck." — txmed

I spent a few hours this morning at Mercer University's School of Pharmacy, talking to 2nd and 3rd year students about culture and communication and how these things affect medication safety. And I'll take the online "thank you" from a pharmacy student with a newly minted Twitter account (@preventionjunky) as another positive sign that young professionals in the pipeline are going to be the tipping point in patient safety.

Finally, I had fun hosting "Bob the Nurse," the nurse action figure with too much time on his hands. Click on over to one of Keith Carlson's blogs to see how Bob Improves Drug Safety. I'm still laughing about his Zilactin walking stick.

Sunday, September 20, 2009

Patient Safety & Social Media: This dog can hunt!

Fabio Gratton, over at Ignite Health, did a fantastic thing by aggregating the tweet feeds of the top 25 Patient Safety tweeps I identified in last week's inaugural listing. You can access real-time information from people who have something to say about patient safety 24/7 by clicking here: The Patient Safety 25.

Patient safety is a discipline that sounds more like a warm puppy than a scientific approach for solving a serious public health problem. So harnessing the power of social media to make high-end patient safety endeavors more visible is a welcome step for those of us who walk the big dog.

Here are FAQs about the Top 25:

Who are these tweeps? And why are they here?

Patient safety tweeps come from 4 categories:

  1. the experience of patients and families

  2. the people and processes that touch them (clinicians, care settings, work flow design)

  3. organizations where care is delivered (how resources are allocated, leadership exemplars, what's valued & rewarded)

  4. other stakeholders (regulators; accreditors; payors; patient safety organizations; pharmaceutical & device manufacturers; researchers)

What makes for a high-end patient safety tweet?

It shares something about or leads people to: effective strategies and resources that reduce error and help shape performance of systems and the people who use them (to receive or deliver care). Errors & near-misses, examples of open disclosure, improvement strategies, outcome measures, technology solutions, and "a day in the life of" accounts written by patients or clinicians frequently yield high-end patient safety information.

People who are effective patient safety advocates borrow from cognitive psychology, systems engineering, and human factors, and they recognize the inherent fallibility of humans. (Endeavors that "blame, shame, and re-train" don't usually make the cut, but they're worth knowing about and tracking since they also shape culture and performance.)

How often is the list updated?

Monthly, around the 15th. The Twitterverse is new, and there are tons of high-end patient safety endeavors beginning to migrate there. I'll be on the lookout for new ones and will include them as their tweeps begin to make an impact.

How can I make a patient-safety tweet more visible?

Use the hashtag: #ptsafety. This makes it more likely that a patient safety-sensitive tweet will be picked up, evaluated, and passed along.

Friday, September 18, 2009

Safety Nurse's Top 25 Tweeps for Patient Safety

Patient safety is a healthcare discipline that takes a critical look at how well intention meets outcome. It's one of the six key dimensions of quality described in the IOM reports that first quantified how often people are harmed as a result of seeking care, then outlined improvement strategies. The other 5 dimensions are: effective, timely, patient-centered, efficient, and equitable.

Broken down to its simplest, patient safety doesn't cure cancer. It exists to be certain that no one dies as a result of a chemotherapy overdose.

The systems used to deliver care and the culture of the organization where care is provided influence how often inadvertent harm occurs. Transparency, disclosure, error reporting, and an urge to prevent errors by learning from others are hallmarks of patient safety. People who champion the science of patient safety borrow from cognitive psychology, systems engineering, and human factors, recognizing the inherent fallibility of humans. They use proven strategies that mitigate the consequences of human error. Like other worthy endeavors, this one is realized with high-end metrics, and, like others, patient safety relies on IT solutions.

That said, my Twitter network is comprised of consumers, patients and professionals, all of whom value patients and their safety. The healthcare dialogue on Twitter is rich, and the perspectives and causes diverse.

Today's list allows me to share 25 tweeps I've identified as valuable patient safety resources, visionaries, or exemplars; their approach is consistent with the science of patient safety and they're currently active in the Twitterverse.

In keeping with the spirit of Twitter, I'm using only 140 characters to share why I follow each one.
  1. @dirkstanley Hospitalist, CMIO. Prolific tweeter, excellent networker. Watches healthcare, strategic.
  2. @ePatientDave Has a dog in many dimensions of the fight to improve healthcare. Gives new meaning to transparency. Rock on, Dave.
  3. @ecri_anderson Editor of ECRI Institute's risk management & pt safety publications. Tweets make high-end PSO info widely available.
  4. @IHIOpenSchool An interprofessional educational community giving students in health professions skills to change healthcare culture.
  5. @INQRI Does research to understand how nurses contribute & improve the quality of pt care. Frequent #patientsafety sensitive tweets.
  6. @ismp1 President of ISMP, a nonprofit, multidisciplinary, drug safety agency. A wealth of knowledge & practical med safety tools. Unflinching advocate.
  7. @JCommission A not-for-profit organization, TJC accredits, certifies health care organizations. "Aligns & defines" pt safety standards.
  8. @jfahrni Pharmacist, infomatics. A good barometer for how it's hitting the frontline. RTs high-end stuff & not afraid to push back.
  9. @jkfaw Parent-founded collaborative, bringing providers & patients together to create a culture of safety.
  10. @JohnSharp Infomatics research. HIT should be the great patient safety enabler, a window into how it can work. More, please.
  11. @JustinHOPE Parent founder of children's patient safety org. Determined advocate for transparency:
  12. @medusesafety Tweets from the American Society of Medication Safety Officers. Leaders in a high-stakes, interdisciplinary milieu.
  13. @midwifeamy Advocates for safety in birth and offers wise counsel, "Don't fix it if it ain't broke."
  14. @MissMedSafety Seasoned clinical nurse & med safety expert in the trenches every day. Lives it & finding her voice in the Twitterverse.
  15. @NPRhealth Follows it all. If it's big, they'll have it and link to high-end analysis. Not for those looking for a Happy Meal.
  16. @paulflevy Healthcare CEO. Models transparency, leader engagement. Blog worth daily read in busiest schedule.
  17. @pharmaguy Knows his mission & how to tweet to accomplish it. Gets around and says the hard things. Needed.
  18. @PSadvocate Patient Safety perspectives by a non-clinician, exposed to process improvement tools OTJ. Finds & RTs are credible.
  19. @PSeditor Editor HCPro, Inc. Fosters patient safety engagement. Nurtures, networks effectively using 2.0.
  20. @quantros PSO, tweets to improve patient safety & reduce medical errors in the US healthcare system. Often prolific & always on target.
  21. @sevinfo Pharma/Biotech information researcher, librarian. Voracious reader & mom has a good eye for safety sensitive stuff. Authentic.
  22. @SusanCarr Editor, Patient Safety & Quality Healthcare magazine. Just plain gets it. Plus her info is readily accessible online. A find.
  23. @tully3000 Excess med mal claim manager. Keeps an eye on all things healthcare & reliably separates the wheat from the chaff.
  24. @WSJHealthBlog Not patient safety only, but some of the best stories there. Check regularly. When it's there, look for more coming.
  25. @writeo An ex-editor at The Oregonian; now 1 of 2 consumer members of OR Pt Safety Commission. Tweets & RTs big picture info to broad base.

Thanks for updating your patient safety tweeps. The main problem with making this list is that the patient safety community isn't as visible as it could be and the list is way too short. Keep in mind that many highly credible patient safety initiatives and individuals haven't yet made it to Twitter, so check back often to update your follows.

If I missed you or one of your #patient safety favs, leave me a comment so I can adjust my filters or begin following you!

Tuesday, September 15, 2009

Grand Rounds: "No Lie"

It's Tuesday, and another edition of Grand Rounds is up at Suture for a Living, a place where a plastic surgeon from Little Rock, AK talks about her passionate for sewing (and it's not just skin). This edition takes you around the world, to hear what others are saying about healthcare.

Wherever the good reads lead you this week, you won't find a place where healthcare is as out of control as what you'll find here in the United States. No lie.

Sunday, September 13, 2009

Don't throw a skater under the Zamboni when you're already on thin ice

I spent a few days last week with my friend and mentor, Mike Cohen, the President of the Institute for Safe Medication Practices. Although Mike has a goodly number of titles and highly recognizable accomplishments (like being named a MacArthur fellow in 2005), you might enjoy spending time with him for the same reason I do: He's a mensch.

When Mike worked as a clinical pharmacist in a hospital pharmacy over three decades ago, he observed how frequently flaws in the system used to deliver medications set professionals up for failure. Systems engineers use terms like "single fault failures" and "opportunities for recovery" when they design work processes that reliably produce an intended outcome. But it's easier to think about these concepts using things we know from our own experiences.

Let's say we send a group of ice skaters onto a frozen pond. Some skaters in the group are Olympians, some grew up on a lake in Moose Jaw, Saskatchewan, and some are promising beginners. Everyone who skates on your pond knows how to lace up and is able to remain vertical while on the ice. They look good and on days when the ice is frozen solid, all skaters skate safely.

But your ice is not uniform. When the temperature climbs, the ice becomes thin. Dangerous spots are not marked. The skaters from Moose Jaw are better able to spot unsafe ice. They stay off or take action to avoid the risky patches. Statistically, Moose Jaw natives fall through less often than the Olympians and the beginners. But at times, even the Moose Jaw skaters go through the ice.

Variability is the enemy of people interested in engineering safety. Variable conditions make it tougher for beginners to navigate a high stakes process safely. When one of your lighter weight Olympians glides over a thin spot without falling through, beginners erroneously believe the ice is safer than it really is. Variability will trip up seasoned people, too. And when no one has gone through for awhile, it's easy to forget how important it is to mark the weak spots and have a means to pull someone out when the ice cracks.

The medication use system is built on thin ice. It was in the 1970's when Mike Cohen first began imploring healthcare providers to look beyond the characteristics of the last skater who crashed through and it remains thin today.

Here's the evidence: Since 2004, Pennsylvania has required healthcare facilities to report serious adverse, unintended medical events and near-misses to the Pennsylvania Patient Safety Reporting System (PA-PSRS). This reporting occurs irrespective of whether patient harm occurs. Last month, PA-PSRS logged its one millionth report. Over 25% of these events involve medications.

You should infer that similar data could be culled from the state where you live. Remember that, like the people in Pennsylvania, you'll have beginners, Olympians, and Moose Jaw natives on your pond. Ask what measures are in place to ensure the ice is being shored up and the thin spots marked. And you should be interested in ice conditions whether you are a patient or a professional.

In hospitals, things that shore up medication safety fall into broad categories that are objective and observable. In fact, ISMP makes a series of comprehensive medication safety self-assessment tools available for free download on their website. Using these tools, organizations can measure their progress in making medication delivery safer over time.

You should be interested in what happens to skaters who fall, too. At about the same time that Pennsylvania passed the one million mark after five years of error reporting, the citizens of Ohio sent a pharmacist to jail for an inadvertent on-the-job error, one that led to the tragic death of a toddler.

Mike Cohen has published a detailed piece An Injustice Has Been Done that explains how thin the ice in the Ohio case was. It's an impassioned plea about the dangers of punishing people whose primary fault arises from being a fallible human.

In the past five years, Pennsylvania has had 1,000,0000 events reported, each an opportunity to identify a variable that affects the quality of the ice and improve it before harm occurs. (Only 4% of the Pennsylvania reports involve patient harm.) If skaters who stumble know they will be pushed the rest of the way down, who will make a choice to share details about what undermined their performance?

And down the road, when your team can no longer recruit Olympians and Moose Jaw natives, you'll be crossing increasingly thin ice. You won't need particularly sharp blades to push the beginners under.

Tuesday, September 8, 2009

Appreciative Inquiry: Grand Rounds

I've been thinking about writing a post about Appreciative Inquiry (AI), an analytic strategy that relies on seeing complex systems as "glasses half-full." This topic hasn't risen to the top of my queue yet, although one of my dearest nursing colleagues, Anne Challis, recently published a piece about the value of AI in RN retention in Nursing Management. (Anne's piece is worth tracking down, if only to see what a doggedly determined optimist can do with an employee's observation that "This job is a joy-sucking horror.")

I think "patient safety" might benefit from some AI treatment (or at least better PR). How, I've been wondering, will healthcare organizations more fully engage the citizens they serve with: "We kill fewer patients by mistake than our competitors"? And exactly who do we think wants to roll out of bed to work in that place?

So I was happy to see that Mark, of Medic999, chose "The time when it all fell into place," celebrating great catches, communication, and coordination of care for this week's Grand Rounds theme.

Today's Grand Rounds is worth visiting for another reason: You'll learn more about what care looks like from the perspective of first reponders and medics. This is valuable information for people interested in patient safety because fewer professional silos, less rigid hierarchies, and more effective communication across the continuum of care are things that improve outcomes. And that's good news for patients.

Enjoy Grand Rounds. And have a nice day.

Monday, September 7, 2009

For Dale Ann & Sorrel: A Labor of Love

Having spent many years as a perinatal nurse, I always wind up thinking about mothers on Labor Day, reflecting on the incredible work that's just beginning on the day a baby is born. So I was taken back today when I found a link to Modern Healthcare featuring patient safety advocacy by mothers who have lost children as a result of medical error. And remembered that Sorrel King's book, Josie's Story, would be published tomorrow.

These are labors most painful.

Visit the Modern Healthcare site and read Sorrel's book anyway. You'll see my friend Dale Ann Micalizzi on the cover of Modern Healthcare. I met Dale Ann through Twitter, Facebook, and shared connections in the patient safety world. She graciously recounted her family's story--one that includes a non-profit pediatric patient safety organization named for her late son, Justin--for an article I wrote last month. More about Dale Ann and Justin's Hope will appear in the Medscape article that's in press.

Sorrel King's daughter, Josie, was just a toddler when she died at Johns Hopkins Hospital in 2001. Sorrel has become a tireless patient advocate advancing Rapid Response Teams and processes that maximize patient and family involvement when clinical conditions worsen. A post I wrote last week, Before there were Rapid Reponses Teams.... came in response to a call put out by The Josie King Foundation asking more families to share their stories.

Today, Dale Ann, Sorrel and others continue the tradition of laboring on behalf of their children. Only this year, and for all the years to come, their efforts will help other families avoid the circumstances that harmed their own.

We all need to take a deep breath. And push.

Friday, September 4, 2009

Shift change again!

Change of Shift is up at This Crazy Miracle Called Life. You'll find an interesting array of stories, and lots of different views about what it means to nurse and to be a nurse.

Florence sat this one out, but I set my engineer's mind free and shared a post from my Medscape blog about medication errors in maternity settings. Unlike serious errors that occur in closed units and places where patients are already very sick, errors in OB are more visible and less likely to be mistaken for spontaneous changes in the condition of an already compromised person. These errors often harm two, and the results can be tragic.

Pop over to Medscape and check out Beyond 'Be Careful' in OB. The comment section has lots of feedback from maternity clinicians, many of whom are using strong safeguards in their medication use systems.

Wednesday, September 2, 2009

Before there were Rapid Response Teams....

Today the Wall Street Journal's Informed Patient column takes on Rapid Response Teams, a process that brings timely attention to patients whose clinical condition shows signs of deterioration. The piece today examines how patients and families add value to this process.

Tapping the wisdom of patients and family members is now recognized as valuable, both in setting care goals and attaining expected outcomes. The Joint Commission includes fostering patient and family participation on the care team among the 2009 National Patient Safety Goals (NPSG), a series of relatively prescriptive practices that target problem-prone points in care. Places where we know care frequently derails and harm occurs. This year, NPSG #13 includes:
Identify the ways in which the patient and his or her family can report concerns about safety and encourage them to do so.
Bringing attention to worrisome changes in the condition of a loved one is something I know about. But when I did this, I didn't think of my actions as anything sanctioned, anything valuable. And certainly not as strategies deliberately undertaken to prevent harm. On the occasions when I bypassed the chain of command in 1992, it's safe to say that no one else on the care team thought so either.

People who cared for my son were good to him. In fact, their interventions made his life possible. But they did not like being on the same team with me, his mother. The bitch.

My second child was born with a significant esophageal problem, one that led him to spend about half of the first year of life at our local children's hospital. When Luke wasn't hospitalized, he often received home nursing care for a portion of each day, first to help with problems directly related to pre-surgical care and feeding and later, to help manage a secondary, but transient, developmental problem with his trachea. My husband, an anesthetist, and I provided home care when the nurses weren't on duty.

If Luke's first year was a journey, the problems with his esophagus made me feel as if we were toting an infant around the world on a gravel road. But Luke's acute respiratory events were sudden stops, times when the road abruptly disappeared and we were suspended, gasping for our own breath, as we applied a tiny face mask and forced pressurized oxygen into his trachea, hoping the intervention would be sufficient to reopen his collapsed trachea and allow us to journey on. We knew the common triggers that led Luke's trachea to collapse, and equally important, we recognized the signs he exhibited immediately preceding these episodes.

I wish I could say that using a G-tube to feed him and keeping a portable oxygen tank close at hand were the most significant stressors we faced. But by the end of the first year, Luke's problem list also included post-operative complications that led to separation of the newly repaired esophagus, an event heralded by both the unwelcome sight of breastmilk draining from a chest tube and the unmasked despair that crossed the surgeon's face as he stood cribside in the ICU. Months later, a failed Nissen fundoplication, complicated by a 6" x 1" wound dehiscence. And eight weeks after that a repeat fundoplication, again accompanied by a wound dehiscence that rivaled the first. Several admissions for presumed sepsis, and so many outpatient esophageal dilations that I stopped notifying anyone that we were going to the hospital and began treating the early morning procedures like scheduled maintenance on an unreliable vehicle.

I mention these things because I think they informed who I was, how I was seen, what I became.

This image, taken in the early days of Luke's life, is the result of a camera malfunction. The film didn't advance correctly, and the roll produced images superimposed upon on another, one blurring into another. This is what the world felt like throughout much of that first year. Nothing turning out as expected. Getting any focus at all often meant piecing together disconnected images, and even then, the meaning was unclear.

I could share my rapid response "success" stories, none of which were predicated on anything more special than the wisdom that came from knowing and caring for my son and a history of communicating with a knowledgeable professional when Luke's situation exceeded my ability to figure it out. At home, if I had a concern I couldn't resolve, I telephoned the attending surgeon. I didn't do this often, but when I did, I received a return call, one that brought either reassurance or a change in the plan of care.

But when my son and I were in an inpatient mode, I was expected to negotiate a highly complicated hierarchy, one that required me to convince a bevy of intermediaries--nurses, interns, residents, differentiated from one another by months of experience--that my observations offered something of value. That something I said should be heard, evaluated, and perhaps, acted upon. It didn't take me long to figure out, in the era before widespread use of cell phones, that "9" was the number that got me an outside line.

Calling an answering service and speaking with an on-call surgeon is materially no different when one is a mother caring for a child at home or the family member of an inpatient in a children's hospital. But the operational response is some different. I think I activated a rapid response only three times, once to ask that the on-call surgeon contact the hospital because my husband was bagging our son with a portable oxygen tank pulled from the Code Cart, an action that became necessary when repeated requests to have one brought to his bedside, in light of the warning signs we had observed, failed.

I think it's important--especially for parents whose concerns were not heard, whose children did die--to know how hard it was to push back, to effect an appropriate response from a system so wholly unsuited to accept input from anyone outside of the rigid hierarchy. My husband and I were both seasoned healthcare professionals. We had knowledge, skills, and the language to describe our concerns. And still, our child almost died.

My son has grown. And so have I. The young woman who probably said, "Paul is standing here bagging the baby because not one of these idiots know what in the hell they're doing," now advocates for system level changes. Changes that will help everyone on duty be able to do what each likely entered a healing profession to be able to do: No harm.

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