Living Through E-coli

The last week has seen a massive recall of Romaine lettuce, following a massive recall last year of Romaine lettuce.  Why?  The Romaine is possibly carrying e-coli.

E-coli is a bacteria that is found in the intestines of cows.  When cows poop and leave manure in the fields, and then it rains, you get e-coli in the water system.  When humans ingest the e-coli bacteria (depending on the strain), they can get incredibly sick.  But the newspapers don’t do it justice when they report on it. Newspapers say most people get diarrhea and some get further complications like kidney failure. That doesn’t really tell you what e-coli looks like, or what it does to the family or the patient.  So I’m going to tell you our story.

My daughter is a survivor of E-coli.  Though I do not often tell the whole story, I think it’s important at this moment to share it with you.  It’s not pretty.  In fact, I have said on numerous occasions that I wouldn’t wish this on my worst enemy.

At the age of three, on Father’s Day morning, she woke up and said she had a belly ache.  That belly ache turned into diarrhea and vomiting. The diarrhea turned bloody.  Though she was potty trained she needed to go back into diapers and I needed to change them every fifteen minutes.  She stopped peeing.  She got pale. She screamed in pain for days on end.  I could not comfort her.

When her pediatrician suggested that we get a stool sample, we leaped at the suggestion, and hand delivered it to the hospital.  Within a few hours we were air lifted from our home in Randolph, Vermont, to  Dartmouth Hitchcock Medical Center.  We were told that Wendy had a complication of E-coli called Hemolytic Uremic Syndrome.  We were told that her kidneys had already shut down and that we were being transferred to Massachusetts General Hospital.  We left at daybreak for Boston in an ambulance and our lives were never the same again.

Wendy’s kidneys did not function for over three weeks, the shiga toxin in the E-coli broke down all of her blood cells.  The doctors were afraid something else was wrong but could not do a lumbar puncture (spinal tap) because they were afraid she would bleed out.  Her white blood count was higher than a leukemia patient.  She began to have seizures, her blood pressure would bottom out, and she would be revived with epinephrine.  Though it was not indicated, the doctors decided the only course of action to possibly save Wendy’s life was to give her antibiotics to kill the bacteria, though they knew that by killing the bacteria they would be releasing all the toxin at once.  The doctor gave me a hug and suggested that both of us sleep in Wendy’s room that night, because, well, you know why.

She lived.  Her kidneys stuttered back to working after about 21 days but were permanently damaged.

A few weeks later, they discharged a brave fragile warrior and her parents, but we barely made it home when stomach pain began again.  Her intestines had closed up as a result of the scarring from the HUS.  We were rushed back through three states and she had a primary bowel resection:  the surgeon removed about six inches of large intestine, and she stayed in Massachusetts General Hospital for another month.   We made it back to our house in Vermont in September.

I took a year’s leave of absence from my job, teaching at the vocational school in our town. Instead I became an expert in caring for my child.  Wendy was also now a diabetic (her pancreas works at 15%, again a victim of the e-coli) and she had serious dietary restrictions.  First, the diabetic restrictions and injections, and then the diet of someone with kidney disease:  low magnesium, low sodium, low potassium.  I begged to get a referral to a dietician because I had no idea what to feed my child.  I made lists of things she could eat by meal, 10 possible breakfasts, 10 possible lunches, 10 possible snacks, 10 possible dinners.  I had lists of low potassium foods and high potassium foods.  Of course all of her favorite foods  were high potassium, so I became an expert at measuring and substitution.

A stomach ache again in October, just before Halloween, where Wendy was going to be Fiona from Shrek.  More of her intestine had closed, more to be removed.  This time, the surgery resulted in an infection and sepsis, and Wendy coded in the PICU and had to be revived in the middle of the night.  Attending physicians came flying through the doors as Michael and I sat in the waiting room, one finally sitting down  next to us and said, “What the fuck happened?”

Seven more weeks in the PICU, with Wendy unconscious.  Chest tubes and PIC lines.  More pumps than space on the pole, so there were extra pumps in the bed.  Teams of doctors and nurses  and pharmacists honestly not sure what was going on.  They tested her for AIDS and Cat Scratch fever on the same day.  They were grasping for straws.  We went through Thanksgiving without her conscious.  They only thing she could do was cry.  She started to improve, slowly.  We had Christmas in the hospital. We couldn’t bring her home.  When we asked, the Doctor said if Wendy was going home, she was going with her.  We got two hours to bring her to our apartment in Boston and open up presents.

At New Years we “celebrated” in the hospital and saw the fireworks from the 17th floor of the Ellison building.  The doctors thought they could release her if we stayed locally, so they released her, but she was on so many medications (24 of them, all taken in two hour increments around the clock) that her digestive system couldn’t take them all and they readmitted her before her birthday on January 9th.  She had no candles on her 4th birthday cake because you can’t have open flames in the hospital.

By the end of January they released her again but she went into heart failure and was readmitted.  They floated the idea of a heart transplant, but decided to wait and see. We watched the Superbowl from the PICU.  She also spent Valentine’s Day in the hospital.  New restrictions were placed.  No more than 750 milliliters of liquid a day, I administered it in tablespoon increments.   I had to measure her urine.  I had to weigh her twice a day, take her blood pressure  twice a day, call the doctors to adjust medication almost every day.  They knew my cell phone number by heart.

By this point, we decided that Wendy and I had to move to Boston semi-permanently, that we couldn’t risk her health and the weather.  So we rented an apartment in Charlestown and she went to three different doctors a week.  This was March. She slowly started to get stronger.  I would take her to the park, I would take her to the art museum, the children’s museum, the science museum.  We walked miles in the city.  She took five medications just for her blood pressure.  She took two medications before she ate any meal.  She had insulin shots once before bed and with everything she ate.  I was a mobile medical lab in my purse.  But she got stronger. She improved.  She grew back muscle and hair that she had lost during her illness.

By Mother’s Day they told me she was going to need a kidney transplant, and we went through the testing process.  No one in the family could be a match.  A few friends tried but had their own health problems.  We needed to wait for a deceased donor.  She was listed in October and transplanted on the last day of January, 2009.  She had just turned five.  I wondered if it was going to be her last birthday.

After the kidney transplant she continued to improve.  She went up up up.  The doctors peeled away her medications. She went from 24 down to her current 5 medications that she takes every day. She still is a diabetic.  She still needs to watch what she eats and how much she drinks, but she appears to be a healthy, active, athletic, child.  We are so proud of her.  And we have met a veritable army of amazing people: doctors, nurses, child life specialists, music therapists, phlebotomists, etc.  I am grateful with every cell in my body for their hard work and dedication.  We leaned on the strength of friends and family, of other e-coli survivors, and met other amazing organ donors and transplant recipients.  And I learned a lot about myself, my husband and our marriage, that we can survive anything, even our daughter almost dying multiple times.

But to be clear, all of this happened, ALL OF IT, because of an e-coli infection.

Now you know why I wouldn’t wish this on my worst enemy.

We do not know how Wendy contracted her e-coli.  It could have been the hamburger she ate at my end-of-the-school-year picnic. It could have been swimming in the river.  It could have been eating bagged carrots.  We determined for our own sanity that we were glad we didn’t know the source of the infection because one or both of us would feel never-ending guilt if it was the hamburger, the carrots, or the river.

Here’s the thing:  e-coli infections used to be rare, but they are becoming more and more common.  And there’s a straight line reason to the problem:  growers aren’t required to test the water they use to irrigate their food crops for pathogens like e-coli.  So if no one is testing for them, the only way we find out the pathogens are there is because people get sick, and sometimes they die.  The Obama Administration constructed rules for the FDA to begin implementation to mandate water testing, but the new administration has tabled the testing mandate for four years.  And people keep getting sick.

Farmers contend that testing water is too expensive.  Well,so are medical bills.  So is chronic illness.  So is never getting your life back the way it was.

So what to do?  Doctors have told me that if Wendy gets e-coli again that she won’t survive it.   I have been considering growing my own lettuce at home, easier in a Massachusetts summer than the winter.  I’m looking at greenhouses and hydroponics, grow lights and aero growbeds.

But I’m also going to be contacting the FDA to get these water testing regulations sooner rather than later.  If I can keep one other person from living through the hell that we’ve lived through, then it’s worth it.  If I need to tell Wendy’s story over and over again, I will.

This is too important to sit this out and wait for the regulations to go into effect in 2026.  How many people will suffer and die before then, on something that can be easily fixed and seems like a no brainer?

If you’d like to read more about it, here is an article published before the latest outbreak called The Science is Clear: Dirty Water is Making Us Sick.

If you’d like to talk to me, leave me a message.

 

 

 

 

Family Centered Care is a Partnership

When you take your child to the doctor, or to the hospital, how much do you know about them?  How much do you influence them?  How much influence do you have over the nurses and the front desk staff, the phlebotomist or the technician?  Have you helped create the design of the location, or the layout of the room?  Have you influenced the way the providers interact with you?

How much influence do you want to have?

When Wendy was first sick, many years ago, we had no experience with doctors or hospitals.  We walked into a brand new situation, filled with well meaning and empathetic providers and a brand new Pediatric Intensive Care Unit.  But the unit was so new that no one knew where anything was, and I remember watching doctors rifle through drawers when Wendy was having a hard time breathing in order to get the right equipment to intubate her (put a breathing tube down her throat.)  I remember when she was breathing on her own again and a resident came in with a weird breathing apparatus that they wanted us to use so that Wendy’s lungs could get stronger, and then after the resident leaving, the nurse whispering that she would get us a bottle of bubbles instead.

I remember in this brand new PICU facility having the problem that Wendy wanted to pee on her own (at the age of 3) and there not being a toilet for her.  And I remember in this nice new facility that the television where we were watching the football game caught on fire.

All of these things were totally normal, understandable, but also preventable things. (Well, maybe not the Television Fire.) If a parent had been around to help with the planning of the spaces, to talk with the residents, to be a part of the process, then maybe some of these snafus wouldn’t have happened.

This is the idea behind family centered care.  The idea that as doctors, and nurses and other staffers, you’re not just treating the illness, you’re treating the person.  And with the case of little kids, you’re not just treating the person, you’re treating the entire family.  Lots of changes have been made since the day we walked into Massachusetts General Hospital almost eleven years ago.  Since our first day, the hospital has instituted bedside rounding, where the doctors go into the room to talk to the patient and the families to make a plan for the day, to see if the family has any questions, and to make things as clear as possible.  The nurses call once you’re discharged to see if you have any additional questions, or might have forgotten something, and to help you set up follow up appointments with your providers.  And you have the opportunity to rate your hospital stay, to mention what has worked and what hasn’t worked.

These are great improvements, real changes to the quality of care and the way parents and patients feel a part of the team.  These have been life changing improvements.

But whet if we could do more?

What if family centered care included the systemic planning of the care to begin with? What if families were asked to meet with providers before care ever took place to make the care itself better, seamless care?

I’ve been working toward this goal for a long time, as a member of the Family Advisory Council at Massachusetts General Hospital for Children.  First, I should tell you about the Family Advisory Council.  The FAC is made up of parents, doctors, nurses, social workers, child life specialists, and administrators.  Its goal is to foster better communication between patients, parents and families, and to make the hospital experience better all around.

One of the things that we do is work on projects that we feel are important, like a pediatric wheelchair pilot program.  The hospital didn’t have pediatric wheel chairs, can you believe it? So a group of concerned parents got together with administrators, went through all of the wheelchairs out there, and with the help of an occupational and physical therapist, chose the best one that would serve the needs of the most kids.  The hospital ordered a bunch and the results have been overwhelmingly positive.

Here are some other things that the Family Advisory Council does:

•  Meet with new residents the very first day of their residency and talk to them about what it’s like to be parents of chronically ill kids and the importance of communication.
• Meet with fellows who have been through residency and are now seeing patients in clinic and let them ask us questions about challenging interactions with patients and parents.
• Host an annual Grand Rounds that usually surrounds communication between patients, parents, and providers.
• Review public health documents before they go out to the public, to make sure that they make sense, that they have  met their goal of communication.
• Review plans for new spaces to see if there’s anything that might have been missed (more electrical outlets or hooks for coats for example.)
• Facilitate workshops on the difference between being “courteous” and “helpful” for front desk staff, because it’s possible to be very polite but not the least bit helpful at all.
• Interview key new staff members who will interact with families, like nurse managers, etc.
• Sit on standing committees in the hospital including Ethics, Quality & Safety, Inpatient Satisfaction, etc.

The idea is that if parents are a part of multiple systemic areas of the hospital, that the whole experience, for every patient and family, is better, because parents have been a part of the process.

This has been an evolution, each step was challenging.  Just a few years ago I asked if I could be a part of interviewing for a new position and was resoundingly told no.  Change has also been over a long period of time.  I’ve been the parent of a chronically ill child for eleven years, and all of this work is voluntary, and I have a job on top of that.  Other parents on the FAC have similar stories.  You have to have the will and the drive to make the hospital a better place and you have to find champions within the hospital who are willing to see the change as innovation.  Sometimes, that means being abrasive or sitting through discomfort.  A lot of change relies on trust, and trust needs to be built both on the personal level and on the institutional level.  It’s a partnership.

I’ve put this list here not because I want to trumpet our horn, but because these are concrete examples on how your hospital can move forward toward more patient and family centered care. I learned of a lot of this though an organization called The Institute for Patient and Family Centered Care. They are a non-profit organization that helps hospitals really self-evaluate where they are on the care spectrum and how they can move forward.  They’re having an international conference this summer in Baltimore Maryland.  I’ll be there.  If you come, please come by the poster session and say hi.

In a world where health care is already scary, its really great to minimize problems.  Having patients and parents be a part of the planning for systemic care can help to minimize those problems, but because this hasn’t often been done in the past, it’s often met with resistance.   Work through the resistance.  Sit with the discomfort.  Move forward together with trust.  Become a partnership.

 

 

 

We Cannot Stay Silent

I’m the mother of two daughters, one of whom is chronically ill. I’m also a historian, and I teach classes at a small college in the Boston area.  This semester I’m teaching a course on Women in American History, where I have twenty-five women as students.

Well, I had twenty-five last week, this week I have twenty-four.

One of my students was killed last weekend by her boyfriend.

She was stabbed over twenty times in her torso, more than half of those in the back.  Her boyfriend had suffered from some sort of psychotic break, had checked himself out of the mental health facility where he was being treated, and less than 48 hours later stabbed my student to death.

It is still fairly early in the semester and I didn’t know her that well. She was beautiful and inquisitive and earnest with her answers during class discussion.  Her papers were well written.  Her last paper, a critique on Linda Kerber’s Women of the Republic, a book about women during and directly after the Revolutionary War, talked about how women took incremental steps to be increasingly active in the public sphere, to be accepted in political life, to be able to enter into legal contracts.  They slowly strove to be perceived as equals.

They still are.

According to the National Coalition against Domestic Violence, 1 in 7 men have been victims of severe domestic violence in their lifetime, while the number of women who have experienced severe domestic violence is 1 in 4.  Twenty five percent of women have experienced severe physical domestic violence in their life time.  That’s hardly equal.

Additionally, 72% of all murder-suicides involve an intimate partner; 94% of the victims of these murder suicides are female.

It’s too many, it blows the mind.

I’m reminded that it can happen to anyone, that the Rob Porter scandal proves this.  He was violent not with one women, but with both of his ex-wives, and the White House has known about it and has kept him on as a staff member until pictures were released where one of his ex-wives had a black eye from his fist.  I’m reminded of the Ray Rice episode where the NFL knew he had been charged with domestic assault but didn’t do much about it until the video was released to the public showing him knocking his wife out cold in an elevator and then dragging her body into the hotel lobby.  These men were protected by silence, and their wives were punished by the Exact. Same. Silence.

As a historian, I started recording oral  histories of women who attended the 2017 Women’s March on Washington, interviewing women from across the country.  Many women said the reason they attended was because they had been sexually or physically assaulted, and having a man who bragged about sexual assault and then called it “locker room talk,” hit them at a visceral level.  And I can’t help but determine that the #MeToo movement has everything to do with the Women’s March, it was the genesis.  But it also goes to show that even from my student’s words, even from the Revolutionary War, women strive to be seen and to be protected equally under the law.

Women are now exhausted and angry.  I am exhausted and angry.

My daughters saw me upset as I picked them up from school and I had to tell them why.  A student of mine had been murdered.  I had to go to class the next day and talk to my students in that class, some of whom shared their own encounters with domestic violence. I shared the news story on facebook, and along with multiple messages of support, I got more messages from friends who had survived domestic abuse and I never knew it.

And yesterday morning I talked to my fourteen year daughter old about domestic violence. I told her it’s never ok for a boy to touch  you in ways that you don’t want to be touched, in a sexual way or in a physical way.  It’s never ok for a man to hit you.  Never .  Never.  That her father and I will always support her, no matter what, no  matter how old she is, that she can always come home.  That this is important, remember it.  And I hope she will.  And I’ll tell her younger sister when she gets a little older.  And I’ll tell them again as time goes on.  It’s never OK.

I debated whether or not to write this blog post, and put it on this site, a site for caring for chronically ill kids.  But it’s important.  We need to talk about it.  We owe it to the women who have suffered domestic violence.  To those who lost their lives.  To those who currently live in fear.

Our silence protects the abuser and punishes the abused.  We cannot stay silent.

Good Night Lights!

There has been a growing movement to bring cheer to sick kids at hospitals.  Not just during the Christmas season, but all year round.

It’s called Good Night Lights.

Picture this.  At 8:30 every night, the city stops and blinks its lights for a minute to say goodnight to the sick kids in childrens’ hospitals. The kids are given flash lights to blink back.  Restaurants and boats participate.  Skyscrapers and police cruisers.  They all blink their lights for a minute to say goodnight.

A few months ago I shared with you the story of the University of Iowa Hawkeyes, how between the 1st and second quarter of their football game, the fans all stand and turn around and wave to the kids in the UI Children’s Hospital.  It’s amazing.  You would think a small thing like that wouldn’t be such a big deal, but the kids LOVE IT.  Their parents LOVE it. Even the staff LOVES it.  Why you may ask?  Hospitals aren’t great places for kids.  They are there because they are sick and sore.  There is very little to look forward to.  This is something special.

That’s just during football season, though.  How many games?  Eight?

Imagine having one thing to look forward to every night, a way to cap off the day and welcome the evening?  And it’s super easy.

I first heard about Providence, Rhode Island, and their Good Night Lights Program on the radio, and I looked it up. Boats and hotels and even restaurants blink their lights to the kids that are sick at the Hasbro Children’s Hospital. You can read about it here.

It has become so popular that it has spread to Orlando, where the city blinks its lights to the Arnold Palmer Children’s hospital.  You can read about that too, right here.

It’s also a thing at Beaumont Children’s Hospital in Detroit.

I want to do this for Boston!

But Boston has specific problems that need to be overcome.  It has a number of childrens’ hospitals.  There’s Tuft’s Floating Hospital.  There’s Mass General Hospital for Children and there’s Boston Children’s Hospital.

How do we triangulate efforts to make this work?

How spectacular would this be if we COULD make this work?

Let’s brainstorm this.

Please leave me a message if you have ideas!

 

 

Last Minute Wishes

Sometimes the season gets us down. There’s a lot of expectations to make the holidays picture perfect, and a lot of times we just can’t live up to all of that, any of us.  And as the end of the year winds down, it’s nice to take stock of the year, see what our successes are, and where we were found wanting.

Brave Fragile Warriors did not have as many posts as last year, my attention was divided and I just didn’t write as much. The first year, I was determined to write once a week, but I realized not many people want to read a once-a-week-post, so I wrote instead when the spirit moved me.  Hopefully that means that my posts were richer and more meaningful.  Hey, a girl can hope, right?  When I look at the analytics, it was viewed in 70 countries around the world.  That’s pretty cool.    I was also contacted to reprint my posts in Today’s Kids In Motion, and The World Transplant Games asked if they could put my blog post in their newsletter (note:  the link is to a PDF).  Probably the biggest part was that one of the blog posts is now in the chapter of a book, The Power of Moments, by the Heath Brothers.  These are huge honors and I feel really lucky that these stories are getting out there.

I did a lot more public speaking this year than I ever expected to (outside of my classroom, of course.)  Topics ranged from the importance of telling your story, to helping to minimize anxiety in an Emergency Room Setting, to creating partnerships within the hospital between patients and providers, and what it looks like to be the parent of a sick kid.  All of these topics are near and dear to my heart, but honestly, public speaking is not my favorite thing in the world.

I also spent a lot of time, both on the blog and in person, advocating for the health care of children.  It’s so important to speak up for kids who are sick, and for their parents who are in crisis.  For the first time ever, I wrote to my congressional representatives, and I even traveled to their offices to speak to their staffers.  I wrote a letter for STAT news that was published about the necessity of the Affordable Care Act for kids like my Wendy.  I worry about funding for CHIP that will only last through March, and I will keep fighting for funding for those kids as well.

I got to do one of my favorite things the other day, which was wrap presents for parents who have kids in the hospital for Christmas.  There are a number of charities that buy presents throughout the year and bring them all in to Massachusetts General Hospital so parents can “shop” for their sick kids and then we get to wrap the presents for them.  In fact, Brave Fragile Warriors was inspired because of this event a few years ago.  I love it because it’s easy, right?  I go in and wrap presents.  But the parents, who have had their kids in the hospital for who knows how long and who are in total crisis mode, are so grateful. It’s one less thing to worry about.  There were two sets of twins at the hospital, each with older siblings at home. One mom had a pile of knit hats, that she added along with her toys for her son who was going through chemotherapy and had lost his hair.  One mom separated her gifts for each child so that she had something to give to each of them. One mom was telling me that the Christmas Tree was still tied to the top of the car since last week because they had to go straight to the Emergency Room and hadn’t left the hospital since.  Think about that for a minute.  It made all of my crises seem rather small in comparison to twins in the hospital and a tree still tied to a car.

It’s too late for a lot of us to help kids and their families in crisis right now, this year, in person.  But I would suggest finding a charity to donate to, for kids, and you’ll feel better, even if your holiday isn’t going so well right now.  If you don’t have a favorite children’s charity, then I would suggest the Make A Wish Foundation.  They give kids with life threatening illnesses the chance to make one wish.  Whether it is to meet a personal hero, or to take a special trip, or to have a certain event.  When Wendy had her Make A Wish, she chose to go on a Disney Cruise, and I can honestly say, it was one of our first steps toward healing and feeling like a family again.  Other kids choose to swim with dolphins, or to be Batman for a day.  You get the idea.  For Wendy it was a big boat with a pool and water slide, and Mickey too.

Happy Holidays to you and yours.  Celebrate the season together.  Make good resolutions.  Rediscover gratitude.  Lend a helping hand to those who need it.

These are my last minute wishes for you.

 

Thanks, Carepages.

Carepages goes dark tomorrow and I am going to miss it.  What is Carepages?  It was a health blog that you signed up for to notify your loved ones about your health journey.  We have used it as a lifeline for the past ten years.  When Wendy was super sick, we wrote every day, sometimes twice a day, to keep our loved ones up to date.  As she got stronger and better, we reduced our notifications.  Recently we only used it to mark big milestones.

The thing I loved about Carepages is that it made you really sit down and take stock of the medical day.  In any given day of craziness, it was good to really evaluate what was good, what was bad, and what were the hopes for the next day. And it buoyed our spirits to get messages from our family and friends telling us that they were thinking about us, praying for us, praying for Wendy.  Hospitals can feel isolating, and it was nice to know that people were supporting us from afar.

Today I spent much of the day copying and pasting all of the updates, over 200 of them, over the course of our 10 year medical journey.  I have to be honest, I wept reading a lot of the updates.  Wendy was so young and sick, and I knew, reading the updates, that things were going to get worse before they were going to get better.  I was so young too, and angry at our situation, the unfairness of it all. In 2007 and 2008 Wendy spent every holiday in the hospital, some 180 days.  I left my job, and Michael took an extended leave.  I slept less than three feet from my parents in a hotel room for months, and it became clear that we needed to move into an apartment.  We had two blissful hours with Wendy in the apartment at Christmas, so she could open up her presents, before we had to bring her back to the hospital.

I marked the day that Wendy’s kidneys started working again, the first time we made it home, the day she coded in the PICU, the day she was put on the transplant list. I read the day of her transplant, and the first anniversary, the second anniversary, the fifth anniversary.

As I read, I also read messages from loved ones who hadn’t gotten married yet, or hadn’t had their babies yet.  Friends who hadn’t gotten divorced yet.  Stalwart friends who were battling their own illnesses and have since passed away.  I am so grateful for those messages, to be able to read them, to be able to keep them.

At some point, Michael and I had decided to make Wendy’s Carepage public, so that other people could take comfort in her story, as I had taken comfort in the stories of others over the years, especially when we were looking for stories of kidney transplants.  We had people follow us from all over the world, and they wrote messages of support as well.

I’m going to miss Carepages, it was a part of our life for a long time. Now in the age of facebook and WordPress, it seems almost quaint to have a blog site dedicated just to an illness journey.  Perhaps that’s why it’s going away.  But it marked our lives.   It marked Wendy’s life, her health, her strength.

Today, Carepages showed me how far we’ve come.  A new town, a new home, a new baby (now eight years old), and new friendships along with the strengthening of old friendships. So thank you, Carepages, for everything, for the good, the bad, and the ugly.

Thank you for the hope.  Thank you for the journey.

 

Happy Birthday Wendy’s Welcome!

It’s been one year since Wendy’s Welcome to the ED has been released.  The video, which was written by Wendy and myself and animated by Payette Architecture Firm, is an introduction to the Emergency Department for pediatric patients.  Wendy is the animated narrator for the nine minute film.  Here are some of the reviews we have received in the last year from the Child Life Specialist who works in the Emergency Department and has collected comments:

11year old – “It let me know about things that were going to happen and that I would have to talk to a lot of people.  My favorite part was learning about the special light in the room.”

Numerous children– Upon entering the exam room “Where is the rainbow light?”

10 year old Chronic patient- “It is cool that a kid, like me, made this!”  I could see his little wheels start turning, wondering what he could create to help other kids too. 

10 year old-  “I know what you do (talking to child life) because I watched the video.” 

15 year old-  “The most helpful part was telling me about all the people I will meet and that I might have to wait a long time”.

4 year old- “ I know I need to change into these (pointing to hospital pajamas). I saw it on TV.”

Paige Fox, R.N., CPEN   “It’s really great to be able to offer our patients a video that teaches them about the emergency department from the voice of a child.  Wendy explaining her own unique experience seems to help kids understand what to expect and make their stay with us go more smoothly.” 

Ari Cohen, MD, FAAP  Chief, Pediatric Emergency Medicine- “It is a perfect example of what can be achieved when good people come together and listen to the ideas of a child.”

Dr. Cohen recently mentioned to me that “Everybody that has seen the video is impressed (meaning ED leadership)and it is being used as an example of what is needed to help the adult patients manage their expectation for their ED visit.” 

The video never would have been possible without the support of the Family Advistory Council at MassGeneral Hospital for Children.  Sandy Clancy, the co-chair of the FAC, helped to keep the project going by setting up committees and getting upper administration to view it and sign off on it.  It was her work in the hospital and Payette’s work outside the hospital that kept the project moving forward, and we are forever thankful to them both.

Wendy’s Welcome has been viewed over two thousand times this year on the Massachusetts General Hospital Website.  Wendy has been interviewed by local news stations and magazines about the video and other hospitals have contacted us for ideas on how they can create their own welcome videos for their pediatric patients.

It’s changing medicine and it’s changing how providers can manage expectations for their patients.  It’s also opening doors for more patient and family participation on the systemic level of health care.  Cooperation between patients and their families with their doctors leads to favorable outcomes across the spectrum.

It has also won three awards.  The Patient’s View Institute honored Wendy last year with the Partners in Care Award and also honored Payette with the Patient Champion Award. In addition, the Institute for Patient and Family Centered Care honored Sandy and me with a Partnership Award for cooperation between patients/families and hospital staff.

What a year!  We are so grateful that Wendy’s Welcome is making such a positive impact on healthcare!

 

 

When to Divorce Your Doctor?

I was hot.

I was furious at Wendy’s endocrine practice.  This had been the third time in four years that I couldn’t get Wendy’s school orders without multiple phone calls that required phone trees and leaving messages on answering machines and waiting for someone to get back to me, multiple times. Every delay each year was for  a different reason:  wrong address, new medical management system, most schools start after Wendy’s school.  But I had had enough.

I decided that I needed to look elsewhere for another place for Wendy and for me.  This just wasn’t working for us.  This divorce has been a long time in coming, but like real marriages, there are positives and negatives to a medical relationship.    It’s when the bad outweighs the good, that you can safely feel like it’s time to walk away and join another practice.

But I didn’t want to do it just because I was angry, and it wasn’t because I had gotten bad news that I just couldn’t accept.  An important thing I learned is that in medical relationships, as in most relationships,  you can’t expect perfection, but you should expect to feel satisfied with the way you are being treated.  And I didn’t feel like we were being treated well.

Add to this the fact that Wendy’s actual endocrinologist was leaving for another opportunity, so we felt like if we were going to make a move, that now would be a good time, because we were going to have to meet and use a new doctor anyway, so we might want to consider going to another facility all together.

Luckily we had many other options, living in a city like Boston.  Not only do we have our hospital, but there are two other pediatric hospitals in the city.  Additionally, we have the Joslin Diabetes Clinic, the oldest and most prestigious medical center for diabetes in the world.  We had a lot of choices, and Michael and I really weighed them, because all of them were good options.

We decided to go with Joslin, because like Mass General Hospital, Wendy could transition from a pediatric patient to an adult patient within the same institution.  Also, since Joslin is a clinic and not an inpatient facility, Wendy’s hospital home would still be Mass General (as she would still see nephrology there.)  Finally, with Joslin there was an opportunity to possibly be part of new and interesting clinical trials that used a large sample size available to Joslin.  Taken all together, it was worth a try.

To be clear, we did not go down in a blaze of glory, when we left the endocrine practice, we just called Wendy’s primary care doc and stated that since Wendy’s doctor was leaving that we’d like a referral for a new doctor at a new clinic.  We made the appointment at Joslin with a new endocrinologist, a new Nurse Practitioner, and a dietician.  We were told to expect to be there all day and to bring Wendy’s records.

The night before the appointment, I was really nervous, because it was the first time in a long time that we were dealing with new doctors in a new place.  I may have punched the printer in the morning using colorful vocabulary because it wouldn’t print Wendy’s labs from the patient gateway.

Ok, I may have punched it twice.

And the drive there was awful, it’s in a super-congested part of the city, there’s no good way to get there.  I thought to myself, “This better be amazing, because to drive here four times a year is really going to suck.”  Parking was just as bad, and there ‘s no coffee shop, no food of any kind in the building.

But the nurse practitioner was great.  She was patient and she answered all of our questions.  Wendy liked her right away.  She looked at Wendy’s numbers and made a few small changes, and then gave us all of her information as to how we could get a hold of her personally, not through multiple phone trees and receptionists and answering machines.

Wendy said that she felt like she knew this nurse practitioner more in the fifteen minutes we spoke to her than in the many years she knew the endocrine nurses at Mass General.  She also admitted, later, that she might have felt better about the new nurse because she wasn’t super sick when she met her, and because we already knew about diabetes.  Both observations were astute especially for a teenager.

When we met the doctor, who had been a fellow at Mass General, she complimented Wendy on her video for the Emergency Department, because she had been at the Grand Rounds where Wendy spoke about it, and she remembered to say something to her about it.  This had an instant effect on Wendy.  It was a great way to build rapport.

We broke for lunch and walked around the corner for sandwiches, and Wendy was excited to go to a new place to eat. When we go to Mass General, we often go to the same restaurants, as if in a rut.  Partially it’s because it’s easy and it’s comfortable. But Wendy really liked trying somewhere new and said so.

We arrived back to the clinic in time to meet the dietician.  Wendy really liked what she had to say. They went over her daily intake, each meal, each serving.  She helped Wendy come up with a plan to eat a little more calcium, a little more protein, which involved a cup of high protein chocolate milk with dinner.  Wendy was thrilled.  I gave in to the pressure and we now have it in our fridge.  It’s a little treat that makes Wendy feel like she’s in more control of her life.  Oh, and it’s chocolate.  At dinner.

After we got home, and after dinner, we all sat down together to debrief the day and figure out if we really wanted to make the change.   We decided we did.  Wendy liked the staff and felt heard.  I felt like Wendy was getting positive messages from adults that weren’t just me and her dad about her diabetes.  I also liked that Wendy was taking a little more control of her health, even if it included extra protein chocolate milk.

I called the old endocrine practice and cancelled our next appointment.  I just said we have decided to go with Joslin instead since Wendy’s doctor is leaving.  I need to decide if I’m going to write a letter to them explaining that we just didn’t feel like we  were getting the attention we needed with hard to attain answers to questions, no meetings with dieticians, and no real transition as Wendy got older.  I need to figure out the right tone, because we were grateful for the care we got when Wendy was younger, it just didn’t feel like we were being supported as she was entering her teenage years.

I’m still thinking about that part.

Divorcing your doctor is hard because you’ve built a relationship and sometimes it’s all you know.  But if you don’t feel like you’re being heard or taken care of, it’s worth it to look elsewhere.  You already know what you have, you don’t know what is possible.  So go find out, gather your data, and make a decision.

I wish you luck, whatever you decide.  It’s not easy.

It’s harder, I think, when it’s your kid, because you want to do the best by them, even when you’re not exactly sure what the best thing is.  Hopefully,  you can decide together.

 

Communication & Hope, Thanks to Hospital Chaplains.

What engenders hope?  Who holds hope?  How can a person foster hope in another?

These ideas roll around in my head, when I am meditating, or when I am exercising. I read about hope, I study it, I read to see what others have said about it.  I know, it’s unusual, but I usually find that when I’m on a project like this, there’s a reason, that things connect to it like a magnet.

Recently, I was sent two pieces of information about Hospital Chaplains, and how they engender hope through communication.  These pieces came to me from different sources, one from the Pediatric Chaplain at Massachusetts General Hospital, and one from the Bishop of the Delaware-Maryland Synod for the Evangelical Lutheran Church.   Both of them saw these items and thought I’d be able to blog about them.  And these stories have been rolling around in my head, along with thoughts about communication and hope.

I know, it’s a pretty messy place inside my brain.

The Chaplain of MGH sent me information about the Wilbert Foundation.  The Wilbert Foundation is a foundation that supports pediatric chaplains of hospitals, with support groups, continuing education training….and they Provide Bertie Bear Boxes.

This is Bertie Bear.

Bertie Bear comes in a box that is designed to look like his home.  He comes with a backpack, a note pad, and a maze. These are meant to keep the sick and sometimes scared child busy.  But these are not the most important things in the box.  The most important thing is the white board:

The white board comes with emotions and a prompt.  So the child can write how he or she is feeling, and why that is.  Imagine if doctors walked into the hospital room and could tell by a glance not only how you are feeling physically, but what your emotional state is too. When emotions go up, vocabulary goes down, it’s hard to talk about how you are feeling.  Imagine if you didn’t have to say it — you could just put a magnet on a board.

Now imagine if you couldn’t speak at all.

That’s when the  other piece of information came to me from Bishop Bill Gohl.  It was about a chaplain who designed a board that allows people in the ICU to express their emotions and ask for simple comforts.  It’s called a spiritual care board, but again, it serves many more purposes:

The idea with the spiritual care board is that you can discuss your emotions, and then ask for help. Perhaps you are feeling helpless, and would like to have someone read to you.  Perhaps you are feeling uneasy and would like to have someone hold your hand.  You can point to the pictures, and a caretaker can understand what you want.

Imagine the relief when your emotional pain is registered and attended to when your physical pain is also registered and attended to.  That’s when real healing begins.

When people feel heard, when they are able to communicate, they feel more hopeful that they will get better.  They feel that they can begin to move forward.  These are powerful tools that can and should be used in both pediatric and adult hospitals, don’t you think?

Here is the link to the Wilbert Foundation, to learn more about Bertie Bears.

Here is a link to a CNN story about the Spiritual Care Boards.

Consider mentioning these to your local hospital, or your congregation.  It might be worth a sponsorship from your church, synagogue, or mosque.

More communication is needed in this world.  So is more hope.

 

 

Your Story Matters, Share It

Do you know  how sometimes there’s a synchronicity and you’re not sure what it all means yet, but you know it means something?

That happened to me.

A few months ago, I was asked if I would speak at a college event called “Your Best 10.” They asked 10 people to speak for 10 minutes on a topic they are passionate about.  After a lot of thought, I decided to talk about the importance of sharing stories.  After all, I am a peddler of stories, as a history professor, I feel like that’s a lot of my class and a lot of my life.

But it took me a long time, perhaps too long, to realize that my story was important too.  I always thought that my story wasn’t worth telling.  But a lot of research has been done recently that shows that telling your story is both healing for you, and creates connection and empathy with the person listening to the story, even if that person is not in the room with you.  That is why programs like “Story Corps” or “The Moth” are so successful on the radio.  People like to be told stories, and they stay with you long after the story itself is over.

Two weeks ago, I was at a meeting for the Family Advisory Council at Massachusetts General Hospital.  The speaker was a woman named Dr. Annie Brewster. She is a doctor who has started a non-profit organization called Health Story Collaborative.  It’s a non-profit that facilitates a patient telling his or her story with a person that they can talk to, and audio equipment with which to record the conversation.

Then people can listen to your story in a sound booth or online.

But, what if the person you are telling your story to is your doctor, and the story you are telling is about your health journey?  Wouldn’t that create connections and empathy with someone whom you really want to connect?

This has become a movement in healthcare, encouraging healthcare professionals to take a few minutes and listen to their patients tell their stories, not just rely on the data presented. It has been used as a tool for residents and fellows.  It is now part conferences for medical professionals.

I gave my speech for Your Best 10 yesterday.

Unrelated, today I got a phone call.  I was asked to speak at a Patient Experience Summit at Massachusetts General Hospital.  It’s funny how things work.  First I speak about the importance of telling your story, and then , the very next day, I get a call to ask me to tell my story.

What’s funny is that I don’t think my story is any better or worse than any other story.

The difference is that, now,  I’m willing to tell it.