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.

 

 

 

 

Holiday Landmines for Kids with Dietary Needs

Happy Springtime!  Well, it doesn’t feel like springtime quite yet for much of the country, but the calendar tells us that the Spring Equinox has already  happened and Passover and Easter are just around the corner.

This can strike fear in the hearts of a lot of parents, especially parents of kids who have allergies or other dietary restrictions.  The reason is because a lot of spring holidays have ritual foods that go along with them, foods that are supposed to be used to celebrate the holiday, either through religious decree or family tradition.

A good friend of mine found out that her daughter has egg allergies. How do you celebrate Passover without eggs?  Its one of the parts of the traditional plate, and it’s the key ingredient for many traditional dishes like Matzoh Brei and Kugel.  It was just inconceivable that they would have to go without eggs during the eight day holiday, where they can’t eat any leavening either. They decided to continue using eggs, but to minimize the use.

There’s no doubt, sometimes you need to get creative if you have a child with dietary restrictions, and this creativity can be seen as assertiveness, not always in a positive way.  Traditions are hard to break.

This might lead to a few family misunderstandings, so thoughtful communication and patience is necessary.  One friend told me of her child’s tree nut allergy and how a lot of Passover recipes have tree nuts in them, so they need to be careful not only looking at the labels, but also informing friends and loved ones to be diligent in their preparations for Passover.  She also finds that she needs to ask on the day of the family gathering to make sure all the rules were followed.  Not everyone loves to be reminded.  Sometimes that means your mother in law might tell you how much better the dish *would have been* if the nuts had been added.  Another friend has a child with celiac disease, so they don’t have Matzoh with wheat in it, and if someone brings Matzoh with wheat, they need to eat it outside.

When it comes to Easter, if your child has allergies, you have to get creative with holiday traditions as well.   A lot of the times that means making new ones with ties to the past.  One friend in Vermont told the story of how she has tried to recreate her mom’s cinnamon rolls using her dietary restrictions.  One friend told of how they make their own food and their own traditions around allergies.  One family only has easter egg hunts at their house because they need to know that peanut free chocolate never touched the inside of a plastic egg.

Here’s a great resource for kids with allergies and Easter Products they might enjoy.

For parents of diabetic kids, you realize quickly after diagnosis, that every holiday revolves around food, and that since all food has a certain number of carbs, you need to keep track. This leads to some awkward encounters…who really wants to count the number of jelly beans for one serving?  Did the child eat one ounce of the chocolate bunny’s head or one-and-a-half ounces?  Do you weigh the bunny before and after?

Suffice to say, the holidays can be stressful. But it’s important to take a moment and be grateful for the things you have:  children who are happy, family who loves you , food to eat, a warm house, and laughter.  The rest are hurdles to be jumped, and stress that comes along with it can be managed. Just remember, parents of Brave Fragile Warriors, you’re brave too.

Whatever spring holiday you celebrate, I wish you the best of health and  happiness!

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.

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.

 

Please Advocate With Me

There’s been a lot going on in the news, and here are some of the things that I’m worried about.  Let’s start with CHIP.

CHIP stands for Children’s Health Insurance Program.  It is a jointly funded program, so each state shares the cost with the Federal Government.  Founded in 1997, it was designed to help the working poor afford health care for their kids. This insurance is for children only and you can only get CHIP for your kids if you don’t qualify for Medicaid but you can’t afford private insurance.  In other words, you need to be slightly above the poverty line to qualify for CHIP.

Congress let that funding expire as of September 30 of this year, leaving states to either carry 100% of the funding or let the program die.  This is a program that gets kids physicals, gets them vaccines, or gets them to the dentist.  It keeps them healthy, and personally I’m a big advocate of healthy kids.   When kids are healthy and well fed, they learn better, they do better and they keep other kids around them healthier too.  To me, it is worth a few extra pennies of taxes.  It’s for children.  It’s the responsibility of all of us to keep our children safe, and when I say our children, I mean ALL children.

Then this last Wednesday, President Trump signed an executive order that  instructs federal agencies to look for ways to expand the use of association health plans and broaden the definition of short term insurance.  As a result, the Trump administration could make cheaper plans with less generous benefits more widely available. This undermines the system of the Affordable Care Act, where the stronger and healthier help to bolster the sicker and weaker, with the idea that someday they will also be sick and weak and they will need a robust health insurance in place to cover them in as well.  That’s the way health insurance works.  you pay now, when you’re well, betting that someday you will be sick.

And eventually, someday comes.

It’s come for my family.  I am the mother of a chronically ill kid who was born healthy but acquired a bacteria that wrecked her little three-year-old body, causing extensive organ damage and resulting in a kidney transplant among other things.  The executive order that the president signed will undermine my ability to keep her healthcare.  It will make premiums go way up.  It will make it increasingly difficult for my husband or me to change jobs.

Imagine what the combination of the expiration of CHIP and the Executive Order signed this week will do to the working poor, with a child who has asthma, or a peanut allergy, or was born premature.

Is it possible to convince people that it is in the interest of society to care for our sickest and weakest members, to care for the health of children?  I think it is.  I’m their advocate, I speak for them, that is literally what advocate means.  It means, “I give voice to.”  And so, I am speaking for the chronically ill kids, the working poor kids, the kids who are the sickest and the weakest among us.

I am asking you to call your Members of Congress to re-instate CHIP.

I am asking you to contact the White House to ask the president to revoke the Executive Order.

It is the job of the strong and stable to bolster the weak and the sick.

That’s what communities do, and this country is just one big community.

Please Advocate with me.

 

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.

 

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.

Match Day! March 17!

This Friday is Match Day.

Match Day is always the third Friday of March, and it pairs soon-to-be medical school graduates with hospitals for their residency.   These medical students have been interviewed and vetted.  They fill out their top preferences, and so do the hospitals.  Then it all gets sent to a centralized matching service.

The results are this Friday.

After graduation in May, they then pack up their things and move to the teaching hospital that they have been matched with.  The old residents, those who are moving onto fellowships or into private practices, leave at the end of June, and the brand spanking new residents start on July 1st.

It’s an inside joke that the beginning of July is a bad time to get sick.  Now you know why.

Wendy entered the hospital at the end of June of 2007.  By the time we got a handle on who did what, and some familiar faces, they all changed on July 1st.

As a parent, I have a different idea of Match Day and new residency now.  At first I hated the July 1st day, because everything would change, and change is hard.  Now, I go in and talk to the new residents on their first day, to tell them what it’s like to be the parent of a chronically ill kid, to tell them what it’s like to basically be a professional hospital parent.

The truth is, parents know a lot, but we still manage to be scared and feel helpless when our kids are sick and in pain.  We can’t help it, that is the way we are wired.

Another truth is, a lot of new residents don’t have kids yet. They’re in their late 20s, they’re just starting to settle down with a life partner. They haven’t had kids, and even if they do, they might not have sick kids.  Yes, they are super-smart, in fact they are used to being the smartest person in the room, but they might not know how to talk to kids, how to talk to parents, to understand what life in a hospital bed is like, what a hospital room feels like. They don’t know to rely on a parent’s hunch that something isn’t right. They don’t know how to go from technical speech to parent speech, and then to kid speech.

They don’t know these things Yet. But they will.

We are a part of their learning process. We give them space to ask questions.  One of the medical students asked the question, “What if I don’t know the answer?”  Imagine, if every doctor asked that question and was given a safe space to talk through it.

I saw a quote today that said, “Making Mistakes is Better than Faking Perfection.”

Do you know doctors whom you wish had been given permission on their first day of residency to ask that question?

I do.

March 17th is known as St. Patrick’s Day.  Here in Boston it’s also known as Evacuation Day, the day that British Troops Abandoned Boston during the Revolutionary War.

But this year, It’s also Match Day.  I wish those new soon-to-be residents the best of luck, the Luck of the Irish.

I’ll see them at the end of June, to tell them my story.

Related:

Last year’s blog post:  What If I Don’t Know the Answer? (6/20/16)

Mothers on the March

This is a blog about Kids with Chronic Illness and the parents who care for them.  Today, though I’m going to talk about the  mothers,both in history, and my understanding of being a mom.

For those of you who don’t know, I teach at a small college, Mount Ida, in Newton, MA. I teach history.  I think I’m the luckiest person alive to get the opportunity to interact with students on a daily basis and help them to become better readers, critical thinkers, and better citizens.  I teach a whole range of classes, different topics, different genres, pretty much anything they ask me to teach I will do it, because it gives me an opportunity to look at a topic in a whole new way, and help guide my students through the tricky parts of history.

The other day, in my American History 102 class, from Reconstruction to the present, we were talking about how Jim Crow Laws created the Great Migration.  Jim Crow laws were laws designed to oppress former slaves and their descendants in the south after the Civil War.  They included separate schools, separate doors, and restricting the use of public facilities like bathrooms, pools and water fountains.  These were the laws that the Civil Rights Acts of 1964 and 1968 sought to abolish, and what Brown v. Board of Education reversed.  It took a hundred years from the end of the Civil War to the Civil Rights Acts of the 1960s.

How did families react to the Jim Crow Laws?  Well, if they had the means, if they had the ambition, if they had the guts, they left.  They moved to northern cities, got factory jobs, and set up a whole new life in a northern city.  Thousands of black families travelled from the rural south to the Urban centers of the North in the early 1900s.  They used their feet to voice their unhappiness, to make a better life for themselves and their families.

Women played a central role in this movement, because they wanted a better life for their kids.  When you stop to think about it, when mothers get involved, it’s almost uniformly because they are thinking of their children.  This is true for the Great Migration, where mothers travelled with their kids, or sent their kids on ahead to uncles, aunts, or grandparents, and then followed behind.

It’s also true for the bread riots across the centuries.  When mothers see their kids hungry or in pain, they go to war.  Literally.  That maternal instinct kicks in and they are fierce.  They fight for their kids.  Here is an article about the Richmond Bread Riots from the Civil War, but it’s not an isolated case.  You can google mothers and bread riots, and you can find any number of examples.

You will also hear tales of heroism about mothers who go to extra lengths when their child is sick, it is a hallmark of many moms.  Moms will learn everything they can, they will be tenacious in their pressure on medical providers, or insurance companies.  I have been inspired by many women in the work that I do as a volunteer at the hospital or in talking with other moms of kids with chronic illness.  We became mothers not knowing what it is all going to entail, and it’s a lot more than we ever thought, but those are our kids and we are going to fight for them.

I recently went to the Women’s March on Washington, not to protest the presidency of Donald Trump, but because I was worried for my daughters and their future.  I was worried that access for their healthcare would be limited (especially my daughter with chronic illness,) that they would have fewer choices for their reproductive rights, that they would face opposition if they chose to be journalists or would have their free speech curtailed, that the planet upon which they live would be more polluted.

I do not have a statistic, but I would say that many women at the March on Washington were mothers.  Many of them brought their children.  Why would so many women take the time, make the trip, knit the hats, write the signs, and march?

The answer is because they felt threatened, both for themselves and their children.  And they were there to show the world that they weren’t going to go backward in time.  Even before the March, I was asked why I was going, how I felt about the iconic Pussy Hats that were created, and my answer was that I was going for my daughters, and I wanted to be a part of history.

Speaking of history…..

Many people wonder what effect this will have, and I  want to leave you with one more history story.  One hundred years ago, after the election of Woodrow Wilson, on the day before his inauguration, Women Marched on Washington.  The Suffragettes took to the streets with banners and signs. 

This was 1913.  It took seven more years for women to earn the right to vote in 1920.  When women were “roughed up” by men along the parade route, and they asked police officers why they didn’t help, the police informed them that “If they had stayed home, this wouldn’t have been a problem.”

My point is, we don’t know yet what an effect this will have on policy, but we do know that with that many women, that we are there for our daughters, and for generations to come, that we are not backing down and we are not going away.

It’s a moment in history that future history teachers will be teaching, and my daughters and grand-daughters will be able to say that I was there.

And, I hope it will embolden them to be active in what they believe in too.

***If you were a woman who marched and would like to donate your Pussy Hat as a historical example of craftivism, the Fuller Craft Museum is looking for donations.

If you have a handmade knit or crocheted Pussyhat to donate, please contact Beth McLaughlin, Chief Curator, at bmclaughlin@fullercraft.org or 508.588.6000 for information.