Medical nutrition saved my son’s life

The Medical Nutrition Equity Act has been introduced in both the House and the Senate. This bill would expand coverage under Medicare, Medicaid, other specified federal health-care programs, and private health insurance to include foods, vitamins, and individual amino acids that are medically necessary for the management of certain digestive and metabolic disorders and conditions. Wondering what all that means, and why in the world health insurance should pay for food? Here’s our story.

37B8EB67-61CA-4376-BE8F-688608014194When L was born, he couldn’t eat. He had almost no functional intestine; he relied on parenteral (intravenous) nutrition for all of his nutritional needs, and continued to need the support of parenteral nutrition for his first three and a half years. Without this very expensive alternative to oral nutrition, he would have starved to death in the first few days of his life. (You can read an introduction to our story here and here.)

With the help of a series of surgeries, his small intestine was reconstructed and reconnected, and his body gradually became able to handle oral liquids and then solid foods. We were finally able to begin working toward transitioning off of parenteral nutrition, which can cause severe liver damage if used for an extended period of time. But with only 20% of the small bowel he should have, and that composed mostly of scar tissue, he initially absorbed very little of what he took in orally. 

I pumped enough breastmilk to get L through until he was 15 months old. At that point, we had to find an alternative that he could tolerate in order to continue the long, hard struggle against both oral aversion and malabsorption. Even though he was old enough to transition to cow’s milk and solid foods, and was taking some of both, he needed something that offered far more comprehensive nutrition that could be far more easily absorbed. 

With short bowel syndrome, there are no one-size-fits all solutions. Every body is different, and every bowel reacts differently. Two patients with identical diagnoses and medical history may have completely opposite reactions to the same food or formula. So, working closely with a pediatric GI specialist and a nutritionist that knew him well, we began trying out different combinations. After several very difficult weeks in which L’s weight and labs dipped dangerously – to the point of requiring an emergency blood transfusion and multiple inpatient stays – we landed on Pediasure Peptide.

Pediasure Peptide is different from the Pediasure you might pick up at the grocery store to supplement your child’s diet. It’s a medical-grade prescription formula for total nutrition, used to treat malabsorption and failure to thrive, and it costs $166/case. As a toddler, L was going through a case every 8 days. 

At first, our insurance covered his Pediasure Peptide – and in that year, he began to thrive. He was finally growing! His labs were trending upward for the first time in his life!

Then one day, we got a call. It was the account manager at our home medical supplier, reaching out to let us know that UHC was denying all enteral formula coverage moving forward. They claimed they had been covering it in error for the past year, and would no longer cover even a portion of it, effective immediately — because, according to UHC, formula was not medically necessary unless it was the sole source of nutrition. 

Maintaining some oral intake was absolutely vital to L’s continued progress, both with regard to absorption and oral aversion, for which he was receiving regular intensive speech therapy and occupational therapy at the time. UHC would have covered his Pediasure Peptide if we could have provided proof that he took nothing by mouth – but to take away his oral nutrition would have meant giving up on progress.  

Our home medical supplier pushed back. UHC ignored them. His GI specialist wrote letters of medical necessity. UHC ignored them. 

We had exhausted our appeals. UHC was able to pronounce that his formula wasn’t needed, despite his entire medical team providing written attestation that it was his primary source of nutrition and was an essential part of his treatment plan. 

So we were faced with a choice: Pay out of pocket, or look for an alternative. 

At the time, we were hitting our deductible by the end of January every year and reaching our maximum out of pocket expenses by April – $6,000 per year, every year, going toward L’s basic medical bills. On top of that, we were spending over $1,000 per year on specialized vitamins and oral hydration supplements, none of which were covered or counted toward our max OOP. 

To pay for Pediasure Peptide out of pocket, in the quantities he needed, would have cost us an additional $8,000 per year. 

At the time, I was in the weeds of chasing after yet another round of reminding UHC that our limit on home nursing visits had been waived by Z’s employer, because they insisted on billing us for a home nursing visit for every single day we had an IV or enteral feeding pump in our home despite the fact that no nurses ever came to our house and Z and I administered all feeds ourselves. I had just received a bill for $55,000 dollars. We were a dual-income family, but I was a graduate student and my income was a teaching assistant stipend. We had already cut our budget where we could. With the added ongoing expense of OOP enteral formula, my entire annual salary would have gone to pay for just his medical needs (let alone any other of the plethora of expenses that come along with caring for a child). 

And so we started over. His medical team was able to provide us with one more “sample” case of Pediasure Peptide to help us make the transition, and we began looking for less expensive alternatives to the only formula that had helped him make progress. 

He didn’t tolerate any of them. A little over a year later, his growth and labs had deteriorated to the point that he underwent another major bowel surgery, requiring a 10-day inpatient stay. He could very well have needed this surgery anyway, even with the support of Pediasure Peptide — but we didn’t get the chance to find out.

L is doing well now. We have managed to forge ahead. But the limitations placed on our medical nutrition options posed significant obstacles along the way – obstacles that we shouldn’t have had to face. 

For others, those obstacles are insurmountable. Conditions deteriorate when the most effective treatment is placed out of reach due to cost. Families have gone bankrupt trying to give their children a chance at survival. People have died jumping through the hoops of insurance companies’ fail-first requirements. 

An estimated 340,000 people in the United States rely on enteral feeding for nutrition, and their options should be carefully weighed and decisions made in close partnership between themselves and their health care providers — not someone sitting in an insurance office who has never even heard of their diagnosis and yet still has the power to dictate their treatment. 

Contact your members of Congress. Ask them to support the Medical Nutrition Equity Act. Lives depend on it.

Here’s why ‘stocking up’ for Coronavirus is a problem

I went to Target recently because we were low on toilet paper – and if you know anything about our family, you know that’s a real problem in our house. 

The shelves were almost bare.

Today, I checked online because I was curious – zero hand sanitizer available via Target.com. Out of stock on Amazon. Clorox wipes: We don’t know when or if this item will be back in stock. 

For the love of God, people. Calm yourselves

I know the news about Coronavirus sounds scary. It’s new and unfamiliar and people have died. I’m not telling anyone they shouldn’t protect themselves or their families. Please do everything you can to keep yourselves healthy (you can find advice on that from the CDC here). 

But a stockpile of toilet paper won’t wipe out COVID-19. And a bunch of people hoarding hand sanitizer and isolation masks can be a real problem for the vulnerable among us. 

No product has an infinite supply that instantly repopulates based on demand. When Hurricane Maria hit production facilities in Puerto Rico that were responsible for most of the U.S supply of IV bags, there was a shortage. Hospitals and home health patients alike had a hard time getting the supplies they needed. When it became trendy among the rich and famous to use IV infusions as a hangover cure, hospitals had to ration IV vitamins for fragile patients in danger of malnutrition – including premature infants. When healthy people buy up (or steal) isolation masks because they’re afraid of being exposed to germs, hospitals may not have enough to protect people who are actually exposed to life-threatening diseases on a daily basis, and people with weakened immune systems may go without. 

We all learned this in elementary economics: if enough people over-buy something, it runs out. And before long, the people who need that thing most will not be able to get it. 

Yes, you need soap and Clorox wipes (were you not already buying those things before?). But you know who really needs antibacterial soap and disinfectants and isolation masks? The man who’s halfway through chemo. The mom who has to perform sterile dressing changes on her toddler on her dining room table. The child who has an autoimmune disease. The nurse who can’t keep caring for her patients if she comes down with the flu herself. The surgeon who’s about to operate on your grandma. 

By all means, buy what you need. Clean your hands and clean your houses. It will help keep us all healthier.

But don’t buy more than you need. If you wouldn’t buy it to prepare for a typical flu season, don’t buy it to “prepare” for COVID-19. Because right now, the panic is far more of a problem than the virus.

Auto-brewery syndrome; or, the time my toddler got drunk on toast

This afternoon, a story about a woman whose bladder fermented her own urine landed in my inbox. 

I was skimming the newsletter quickly, but that story stopped me in my tracks. I have never before seen clinical documentation of a case like this – but I have lived it. Reading her story, I figured it was high time I shared the tale of the one of the most bizarre things that has ever happened to us – and that’s saying something, considering that I once gave birth to a child whose intestines were growing on the outside of his body. 

This is the story of the time my two-year-old got drunk from eating toast. 

It started out like any other Saturday morning. We woke early, made breakfast, probably watched cartoons. This was at the peak of L’s oral aversion, and also at the peak of us trying to increase his oral intake to try to work toward weaning him off of TPN. That morning all he would eat was toast, so toast is what he ate. He downed two slices for breakfast, and then we went off to play for an hour at The Little Gym, where he ran and tumbled with friends and was perfectly happy and well. When we got home, he asked for toast again, so I gave him another slice. And at lunchtime, when he gagged and refused to touch anything on the balanced plate I set in front of him and asked again for toast, well, I was thrilled he was eating anything at all, so toast he had. 

Then he went down for his nap. And when he awoke, I immediately knew something was very, very wrong. 

He couldn’t stand up without support. When he tried to walk, he stumbled back and forth and then fell down. He was in good spirits, all things considered, but seemed to be confused about where he was and what was happening to him, and he could barely even sit upright without falling over. 

These sudden, unexpected symptoms prompted us to rush him to the ER. When we got there, the attending physician was alarmed, but didn’t quite know what to make of his condition. His bloodwork seemed normal, at least for him. Nothing neurological seemed to be causing these symptoms. But by this point, I was having to hold his head up for him because he seemed to be having trouble controlling it. 

Parents in our online short gut support group encouraged us to check for D-lactic acidosis, but the pediatric ER team had never heard of that and didn’t know what test to run. We finally got in touch with his GI specialist, who was familiar with D-lactic acidosis and ordered a test, but it was a test with some lag time, and so we were finally admitted to the pediatric unit for close observation. 

By this point it was well past L’s bedtime, and he had fallen asleep on me. We were wheeled up to his room in a transport bed together, with him sleeping the whole way. Around midnight, the floor pediatrician tried to rouse him, not wanting to let him sleep too long without examination given his neurological symptoms – and he couldn’t be awoken.  

At this point, the medical team was rather unsuccessfully trying to hide their concern, and I was trying to contain my panic. Nothing seemed out of the ordinary, all tests were coming back clear — so what in the world was wrong with my baby

Around 4 a.m., L awoke on his own, as chipper as could be. He wanted to cuddle, wanted to play, wanted to sing a song, and seemed thoroughly unconcerned about all the bustle and fuss surrounding him, having spent a good portion of his life in busy hospital rooms. We were kept for observation for another day, kept him NPO to help flush his system, and then were sent home. 

Four days later, the test confirmed a buildup of D-lactate. Because his dilated intestine moved very slowly and allowed food matter to sit in the dilated section for long periods of time, normal gut bacteria tended to build up into small bowel intestinal overgrowth, and feeding that legion of bacteria so many carbs in such a short amount of time caused them to produce an excess of D-lactate, which enters the bloodstream and causes symptoms similar to inebriation. 

It’s not quite the same as auto-brewery syndrome because his gut produced D-lactate instead of ethanol, but the result is largely the same. That wild 24 hours of anxiety that left both parents and medical professionals perplexed and alarmed essentially boiled down to this: L got “drunk” on toast, passed out hard, slept it off and woke up raring to go. 

His overgrowth and D-lactate production was likely exacerbated by the lactated ringers he was receiving intravenously at the time. We stopped lactated ringers and have avoided them since, and have not had another incident of D-lactic acidosis (or at least not one that has been severe enough to produce symptoms). L’s tapering surgery has helped a lot too, because his better-functioning gut doesn’t allow food matter to linger long enough to ferment in this way anymore.

But if you’ve ever wondered why we have to limit carbs and sugar, well, one major reason is because the body is a strange and wondrous place that sometimes gets a little bored and likes to recruit an army of bacteria to brew its own poo-beer. 

D-lactic acidosis is rare, but it’s fairly common among short gut patients. If you’re interested, you can read more about it here.

Dr. Dudrick

A healthy newborn baby has, on average, around 160 cm. of small bowel. When L was born, he had a grand total of 10 cm. of functional bowel. Ten. It wasn’t enough to absorb anything. 

If my baby had been born a few decades earlier, he would have died within days of being born. 

Instead, the incredible work of someone we’ve never met saved his life. 

As a surgical resident in the 1960s, Dr. Stanley Dudrick was struck by the realization that many hospital deaths were caused, not by the primary diagnosis of the patient, but by malnutrition. If a patient were unable to eat, it didn’t matter how skilled their surgeon was or how successfully they were treated; without proper nutrition, there is no healing. And so he set to work to find a solution, and became a pioneer in the world of intravenous nutrition, developing both a compound that offered complete nutrition (TPN) as well as a method of delivering it into veins large enough to receive it. Today, more than 40,000 Americans rely on TPN due to short bowel syndrome, gastrointestinal cancer, Crohn’s disease, motility disorders, intestinal injury, and an array of other diseases and disorders that prevent or impair the ability to eat or absorb nutrition from food.

L began receiving TPN – total parenteral nutrition – almost immediately after birth. For the next three and a half years, those miraculous bags of chemicals were his primary, and at many times sole, source of nutrition. 

Without TPN, I would have spent the summer of 2013 pumping gallons of breast milk while watching my baby slowly starve. Thanks to Dr. Dudrick, instead of starving, L began to grow. Today, he is six years old, enrolled in his school’s gifted program, and quite literally climbing mountains.  

I had hoped I might someday be able to thank him for the incredible work he’s done – the work that saved my baby’s life – but Dr. Dudrick passed away this week at the age of 84. May you rest in peace, Dr. Dudrick. We can never thank you enough for the gift you’ve given our family and so many others like us.

To learn more about Dr. Dudrick’s amazing legacy, read this homage to his life and work or watch the video below.

Preventable harm

This morning, at a conference, a healthcare executive spoke about preventable harm and asked everyone in the audience who had been on the receiving end of a clinical error, either personally or through a loved one, to stand. The percentage who stood was sobering – and I was among them. 

I’ve been working in health care for about three and a half years. For most of that time, I sat next to a Clinical Excellence team committed to eliminating preventable harm, and I learned quite a bit about event reporting and process improvement simply through proximity. 

I’m also intimately familiar with the many times we have received poor quality health care. Every error made in caring for my son is burned into my brain.

But before today, I had never stopped to really let soak in the extent of the preventable harm we’ve experienced, the magnitude of its impact on L and our family – and the lack of action that came from it. 

L’s journey began more than six years ago, at a time when I had never heard of his diagnosis, let alone the ins and outs of event reporting and preventable harm. Many of our “events” seemed like just another hill to climb in a journey across mountains. I was upset that someone had been careless, had made things harder for us during the hardest stretch of my life, and then I moved on to deal with the next thing that inevitably came. But in retrospect, many of these were events that should have been reported and corrected. Many of them were events that caused, or had potential to cause, real harm in our lives.

Among other things: 

One day in the NICU, after I had spent a full 24 hours around the clock implementing a strict wound care regimen to heal the damaged skin around L’s ostomy and had made a lot of progress, I left to teach a seminar. While I was gone, L’s nurse (not one of our regulars) ignored the detailed instructions she’d been given at shift change, and which I had reiterated before I left, for the sake of letting him sleep. When I returned less than five hours later, his belly was raw, weeping and bloody. I set about starting the process of healing all over again. To my knowledge, this was never reported.

Another time, later, L had been admitted for a 48-hour blood infection rule out. He had an ear infection, but with a central line we had to be cautious. Upon discharge, a young nurse disconnected his infusion – a task I performed daily at home, but wasn’t allowed to do in the hospital since I lacked the proper certification. She removed the microclave, which is the first and primary barrier to germs entering his line and should never be removed during a simple disconnect, let his line drop against his chest completely uncapped and gaping open, and prepared to send us on our way. Me – a graduate student in literature who had no clinical training and hadn’t slept in 48 hours – me and my quick action to replace the clave myself was quite possibly the only thing that stood between her error and sepsis. My mama bear reaction startled her, and I imagine she never forgot to replace the microclave again; but I’m equally certain this near-miss was never reported. 

And then there’s another example that in retrospect is perhaps the most egregious I’ve experienced personally, and the one I’ve been dwelling on all day. L spent 131 days in the NICU; we and our amazing NICU team worked very hard to get him well enough to come home, and to make ourselves capable enough to bring him home, as he was still infusing TPN 18 hours a day and we had to learn to manage that. So when we got home, we sanitized the house, locked the doors, and did everything in our power to keep him healthy and out of the hospital. 

We made it 30 days. And then, in L’s second month home from the hospital, he was readmitted multiple times. His line kept occluding every 8 days, like clockwork, and the blockage wouldn’t respond to TPA, so it was replaced, and replaced again, until a seasoned nurse finally dug into the far reaches of her experience and used hydrochloric acid to clear his line. To this day I have no idea if pushing hydrochloric acid into the central line of an infant would alarm most clinicians; but I know that it terrified me. 

The occlusions, it turned out, were a result of our home infusion pharmacy mixing his TPN improperly. The chemicals were reacting with each other to cause a buildup inside his central line, which explained the perfectly regular schedule of his line filling with what might as well have been cement. 

 

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Our little Frankentestine, 5 months old, awaits a surgery he never should have needed on his very first Halloween. 

Due to that error, we experienced three completely preventable inpatient stays – the first on his very first Halloween. My 5-month-old son (just 3.5 months adjusted) had two completely preventable surgeries, two completely unnecessary trips into general anesthesia. He missed a full cycle of TPN, his only real source of nutrition at the time, three times, which is equivalent to an infant fasting for 24 hours on three separate occasions. He gained no weight that month, and grew no inches. His little body was exposed to hydrochloric acid in a channel that, when unclogged, led straight to his heart. And I spent months afterward flying into a panic at the sound of a beeping alarm – on his pump, on our coffee maker, on the washer and dryer.

All of this was completely avoidable, if only someone at a pharmacy had done their job properly. Our medical team’s solution was to switch home infusion pharmacies, and it worked – for us, which was all I had the emotional bandwidth to think about at the time. But to my knowledge, the original pharmacy never knew (or admitted) the harm they had caused, and continued with their processes unchanged. 

I know healthcare is delivered by humans, and we all make mistakes. But the number of deaths each year in the U.S. in which preventable clinical error is a contributing factor is equivalent to a jumbo jet crashing every day with no survivors. Every. Single. Day. 

L has been harmed. My family has been harmed. I have been harmed. And it could’ve been prevented.

We’ve met a lot of incredible clinicians along the way, to whom we owe L’s life and our sanity. We can never repay them for what they’ve given us, and we know that the vast majority of people who work in healthcare want to help, no matter how expertly or poorly they deliver on that promise. So I’m trying to stay true to the foundational quality improvement principle that you should focus on fixing the processes that allow mistakes rather than blaming the people who make mistakes. 

But tonight old angers are bubbling fresh. And tomorrow I return to work with a renewed commitment to do whatever I can to help shape healthcare for the better.

Closure, Take 2

Last winter, we were planning to have L’s leaky g-tube site surgically closed — a “gastrocutaneous fistula closure,” to be exact. I was busy reflecting on how fitting it would be that this surgery was called a closure, as it would be the first that officially marked an unqualified ending for us — even knowing full well that there may be more to face ahead — when we were derailed by increased symptoms and some imaging that made us pause.

Now, in June, we’re back again for Closure Attempt 2.0.

7C23DF0A-C426-4312-AC27-737E96AE2B21.jpegIt’s a terrible time for a surgery, to be honest. We’re busy packing up our entire house, my last day at my job is Thursday, and in six days we’re moving 816 miles away.

At the same time, that’s exactly why we’re having a surgery right now. It should be a simple 45-minute procedure, but when you’ve had so many major abdominal surgeries, scar tissue and adhesions can complicate even the simplest thing. We want to make sure L’s surgeon here, who knows his belly better than anyone, is the one to bring this chapter to a close.

And it is closure in so many ways…. We never intended to stay in St. Louis, Z and I. We’ve had our sights set on the mountains for ages. But when L was born, our world was so entirely wrapped up in his survival that everything else fell away.

Priorities change, when you have a child with complex illness. Options are taken away from you. I changed my career path (for the better, I might add); we delayed having a second child far longer than I ever thought I would; and moving elsewhere left the conversation entirely, because we couldn’t risk leaving a medical team we knew and trusted.

That same medical team that has kept us in St. Louis is now the only reason we’re able to leave. They saw L — and me — through his darkest times; they’ve been with us through every major setback and every major milestone in his recovery, and it is thanks to them that we have made more progress than we used to dare to hope possible. They have given us the gift of being able to leave them.

This small surgery marks a big ending, and we are forever indebted to the incredible people who made it possible.

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Create Your Own Eggshell Masterpiece

I’m taking a break from our regularly scheduled programming to share with you the best holiday “craft” I’ve ever done, hands down.

The idea came from a pin that I saved and then later realized led to a broken link. Since there aren’t ready-made instructions to point to, I’m taking a moment to write out the steps (which are much easier than I’d expected when I set about to figure this out myself) because you’re going to want to do this.

Seriously, you have to do this. It doesn’t matter if you have kids or not if I’m being honest, I did this more because I wanted to than because I knew L would dig it. I’ve always wanted to make my own faux Jackson Pollock – it’s literally on my bucket list – and this project allows you to be joyful while also unleashing any pent-up frustration you might have lying around in there, and end up with a thing of beauty (or at least a good old-fashioned outdoor mess!).

Get some eggs. Get some paint. Do iiiitttttt.

The sticking point for me when I started trying to figure out how to make this work was how in the world to empty eggshells and then fill them with paint. I googled “how to make a hole in an eggshell” and “how to cut the top off an eggshell.” I learned about fancy tools made for these purposes. I read anecdotes about people’s grandmas preparing blown eggs when they were children. I came across detailed knife-sharpening recommendations. I checked to see if we own an awl (we don’t).

The real trick: don’t overthink it. When it came right down to it, I didn’t need eggs with perfect little holes or with the tops neatly cut off; I needed empty eggshells that could hold paint.

So, to start your project: Take an egg. Take a spoon. Whack the skinnier, pointy end of the egg with the spoon.

6E7A9A3B-FB49-4494-976B-5BFD873109C0That’s it. A good whack or two should crack the end enough that you can pull a few chips of shell off, shake out the contents (I saved the eggs and made a breakfast casserole), and have a big enough opening to easily squeeze some paint into. It wasn’t hard at all – I prepared 20 eggs in less than 15 minutes and I didn’t lose a single shell to accident or error.

Step two: Rinse out the inside of the empty egg shells and let them dry. I’m assuming this might be important, although I didn’t test what happens when raw egg white and paint mix. I actually prepared our egg shells a few days beforehand.

Then, simply fill the empty shells with paint (I used paint that came in a squeeze bottle and filled the shells about ⅔ full), prop a large canvas up against a tree or other surface you don’t mind getting some paint on, and have at it.

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The canvas we used is 30” x 40” and was on sale for just $14 at Michael’s. I balked at the first large canvas I came across that was $75 dollars, but we kept walking and found the discount canvas section just beyond the fancy ones.

L’s first throw wasn’t hard enough, and the egg ricocheted off without breaking, so this might not be ideal for younger kids or kids who will have trouble throwing with some force (L is almost six and has quite the cannon, for a t-ball player). Luckily, if the egg doesn’t break, you can just pick it up and try again. We were even able to refill and rethrow a couple shells that made good contact but stayed mostly intact. Just be sure your kids know to pick up the shells with the open side up!D67A01F3-99E7-4EFF-A183-69B7CCCA0821.jpeg

This was SO fun. Our masterpiece is currently drying and is going to hang in a place of honor in our basement. I kind of wish I had prepared a few more eggs just so Z and I could have thrown a few more ourselves (we ended up doing around 5 each while L did the other half) but I’m honestly not sure how much more paint this canvas could hold!

Follow @ThisGutsyLife on Twitter

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Marathon

This morning L participated in the “Read, Right, & Run” marathon. Today’s race was just a 1.2-mile course — still a fairly formidable challenge for a kindergartener! — but it was the culmination of a months-long commitment to read 26 books, do 26 good deeds, and run a cumulative 26 miles.

It took us more than three months to complete the entire marathon. We read and read and read. We picked up litter at the park, put quarters in all the carts at ALDI, made cards for family members, delivered treats to neighbors, shared snacks and toys with G when she was sad. And L spent his weekend afternoons and even his recesses at school running, bit by bit, completing an entire marathon one half-lap at a time.

L learned — and sometimes struggled with — new and difficult concepts like pacing yourself, patience, and keeping going even when things are hard. Lord knows he’s done all these things before, without realizing it, but this was the first time he’d faced some of these concepts head-on, by choice, across weeks and months, and he rose to the challenge admirably.

On the way out, Z and I wanted to grab a coffee, so we took a different route out of the park — one that took us right by the hospital. As we paused at a stoplight, I looked up to see this shiny new hospital tower rising above us, and it took my breath away.

771DE070-734E-4930-88BD-8222D1A9972F.jpegYou see, for more than three years, L and Z and I watched this tower being built from the windows of the neighboring children’s hospital. We were admitted so many times I’ve lost count, and for a truck-loving toddler, there was no better entertainment during those endless inpatient hours than watching the crane swing slowly but surely around, watching the construction workers do their well-choreographed dance, watching a giant made of concrete and steel materialize before our eyes.

We watched that tower rise, bit by bit, layer by layer. At times it was a marker of my frustration; they had made so much progress, and here we were, back again, making so little.

They weren’t quite finished with it last time we were inpatient — now over two years ago, thanks to the incredible surgeons and GI team who work in that very building. And now, today, the tower stands complete, and my son has run a marathon.

“Mama,” I heard a little voice say from the back seat. “Mama! I wouldn’t have been able to do the marathon if I was in the hospital, would I?”

No, buddy, no you wouldn’t; but you wouldn’t have been able to do it without that hospital, either.

Follow @ThisGutsyLife on Twitter

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Defeating stains in 7 simple steps

As the mom of a GI kid, I know stains. When he was a baby, L’s vomits were of a color, volume, and velocity that visibly alarmed more than one ER nurse, and he pooped pure liquid 15-20 times a day. Other moms throw away onesies after “poopsplosions”; we lived the Poopocalypse daily. True story: once, during a diaper change, he let loose a poo-nami with such force that it deflected off the diaper I hastily held up in self defense and splattered a full six-foot stretch of wall above his changing pad.

I know stains.

If you have kids, stains are an inevitability. Six years and another puke-tastic kid later, it’s time I pass on what I have learned.

  1. Spray, spray, spray: Invest in a diaper sprayer. Your kids have done their share of spraying; now it’s your turn. Whether or not you use cloth diapers, a diaper sprayer will let you spray the chunks off of pukey, shit-covered clothes directly into the toilet. Do so as soon as possible after the “event.” This little gadget will be useful far beyond the diapering years.
  2. Spray, spray, spray: Find a good stain remover. I like OxiClean laundry spray, but whatever product you use, soak stains in a stain remover as soon as possible after the “incident.” Be liberal with the spray. Invest in stock in this company.
  3. Never let soiled clothing sit until the morning. Wash clothes before the stains set if you want to have any hope of salvaging them.
  4. Use club soda. Especially effective when cycling through those late-night loads that you shouldn’t let sit until morning; I recommend adding vodka and a few limes.
  5. Buy kids’ and baby clothing second hand. Most places have local buy-nothings and swap sites these days. Paying second-hand prices will allow you to care less about whether you actually get those stains out or not.
  6. Lower your expectations. Stains, much like shit, happen. Pro tip: Get your kids out the door quickly each day and allow them to play in the dirt a lot so people can assume the stains are the fresh products of joyful frolicking and are totally definitely not from bodily fluids that happened weeks ago because that would be gross, you animal.
  7. Consider nudism. Bare skin is much harder to stain. You know your kids would prefer this anyway.

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DC & the DDNC

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A week and a half ago, I went to Washington, D.C., to participate in the Digestive Disease National Coalition’s Public Policy Forum. I had planned to follow up with a recap post right after, and I left the forum informed and energized and full of plans to take what I’d learned and done and keep those balls rolling forward.

And then I left the Senate building and ran for a train, then a bus, then a plane, then another plane, and got home at midnight, and nursed a baby at 3am, and went to work at 8am, and spent the next week trying to catch up, and now here we are….

Honestly, I probably would have shared something earlier, but as I think back on my whirlwind trip to D.C., it’s a little overwhelming just figuring out where to start. I spent all of Sunday afternoon hearing presentations from people who know an awful lot about obstacles to care that I have only barely scratched the surface on, or that I have experienced but didn’t really have the terminology to put in a broader context, and about other things that have to do with other diagnoses entirely but were eye-opening when it comes to important health issues that can impact all of us; and then I spent all of Monday having conversations and connecting dots and figuring out how to share our story in a way that matters and trying to sort out where my efforts go next; and I left wanting to share ALL the things all at once because it’s so important and people’s lives literally depend on it and WE can be the ones to make a difference!

But also, well, it’s a LOT to digest.

So I’m going to step back and hit pause on trying to regurgitate all the information I gobbled down and half-absorbed in a span of less than 36 hours. If I’ve learned anything over the last few years, I know that large quantities are easier to digest if they’re spaced out over time and appropriately chewed over….so I’ll give all that info some breathing room.  

What is useful right now, I think, is this: If you’re thinking about doing something like this, whether it involves traveling to D.C. or meeting with your lawmakers locally or even just picking up the phone for the first time, DO IT. Your story matters. Your voice can make a difference.

If you’re following along because you’ve considered participating in something similar, or you found this blog because it’s now January 2020 and you’re debating whether you should register for the DDNC Public Policy Forum and want to know more about what it’s all about, here’s how it went for me.

I got in to D.C. on Saturday evening, which turned out to be perfect timing for two reasons:

I had time on Saturday night to walk by the White House all lit up after dark, and – more importantly – to put this in my belly.

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Yes, I did eat the entire thing. I regret nothing.

It also allowed me to spend all of Sunday morning doing a walking tour of the major monuments before the forum began. I mention this because it became an important part of my experience there: right before I participated in a concentrated effort to make our voices heard so that we might shape our nation for the better, I spent four hours immersing myself in monuments to people who gave literally everything to help shape our nation for the better, and to protect my right to make my voice heard. I’d never been to D.C. before, but even if I had, it was an incredibly poignant way to kick off the forum.

Sunday afternoon involved a series of presentations from physicians, patient access advocates, and industry representatives who spoke about things like current research and funding, obstacles to access like step therapy and non-medical switching, and the highlights of the DDNC’s legislative agenda (you can find more detail about their legislative agenda here).

I also met some other people who were there through the Oley Foundation, including a member of the Oley staff who was absolutely key in my attending the DDNC forum at all, as well as some parents who are among the very small group of people who can truly understand what we have been through with L. I was able to talk freely about our journey without stopping to explain anything, in a way that I have very rarely been able to do, and with people who don’t bat an eye at talking about some of the less pleasant facets of digestive disease – a whole group of people who think it’s perfectly acceptable to talk about vomit and poop while eating breakfast! My people.

And, on Sunday, I finally found out who I’d be meeting with on Monday.

This day was useful for helping me contextualize some of the obstacles we’ve run into and providing some language to use to help connect our experience with current policy issues, and it also provided an opportunity to connect with people and organizations that can provide resources for me as a caregiver and can help me continue and hopefully expand my advocacy efforts (for example: you can go here to share your story about obstacles you’ve faced regarding coverage for medical foods, like enteral formula).

On Monday, we reconvened for another brief overview of the highlights of the DDNC’s legislative agenda and got together with our teams to learn each other’s stories and talk strategy. My team was a pretty well-rounded group: me, an adult patient who relies on enteral feeds after a difficult battle with throat cancer, the president of the United Ostomy Associations of America, and a GI nurse whose job in part involves colorectal cancer screening. The DDNC tries to group people based on the state they live in so they can try to arrange meetings with the appropriate lawmakers, but there aren’t a lot of participants from the great state of Missouri, so our little group represented Maine and Delaware as well.

I was a little nervous leading up to Monday, partly because I didn’t know who we’d be meeting with until the day before, and mostly because I’d never done this before and didn’t know what to expect. But I felt much more equipped to steer these talks after the Sunday information sessions, and one of the members of our group had participated in similar forums many times (I think this is probably true of most of the groups there that day), so she led the way at first, and we had a really lovely conversation at the first office we visited. The aides we spoke with seemed genuinely moved by the stories we told, and after the first meeting my team kind of found a groove and the words flowed more and more easily as the day went on.

We met with a total of 8 offices – none of the actual Senators or Representatives, but with their aides and health care advisors, who on the whole seemed very engaged and well-informed about the issues we discussed. Our conversations were brief – anywhere from 10 to 25 minutes, which meant we needed to present our stories in a focused way that really got to the heart of the issues (I had practiced the night before, because, as you may have gathered, being concise is not my strong suit….). After the first couple of meetings, though, we had our elevator speeches down, and by the end of the day we were even talking about facets of each other’s stories, weaving a bigger narrative about the way these issues impact all of us.

One useful tidbit I’ll leave here is a piece of advice from another mom who’s had a lot more experience on the Hill than I have: Bring a simple handout you can leave with the legislator or aide. The DDNC provides a folder of information to leave behind, but it’s, again, a lot to digest, and it’s focused on the policies, not the patients. I brought with me a half-sheet handout with L’s picture, a very basic summary of his health journey, and a simple list naming specific legislation we’d like them to support, to help connect real people with the policies at hand. If you’d like to create something similar, mine looked like this:

Meet L

And of course, I can’t post this without including the mantra of the weekend: Wear comfortable shoes. You’ll be doing a LOT of walking.

I came away feeling, like I said above, informed and inspired and energized, and I’m looking forward to the promised follow-up from the DDNC with advice about how to keep these conversations going. I took along photos of L to share in our meetings, but I’m hoping to go back next year and actually take L with me – I want to keep being an advocate, and equally as important, I want L to see me being an advocate, and know that he has a voice too.

Maybe we’ll see you there?

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