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.

 

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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.usa-north-carolina-1950-par41687

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.  suffragette-march-1913

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.

Impatient, Empowered

Yesterday, Wendy received the Patient View Impact Award, the only national award given to patients who make a personal impact in medicine. Payette was given a special award too, for being a champion of the project.  (In reality, without them it wouldn’t have been possible. )  The awards were given by the Patients’ View Institute, a non-profit organization committed to organizing and amplifying the patient voice, so we can have more impact on the quality of care we receive.

The Patients’ View Institute collects patients’ stories, organizes them, and allows them to be viewed by others going through similar circumstances.  It also awards a few great stories once a year at the annual meeting of the Leapfrog Group.  The Leapfrog Group is a non-profit committed to transparency in medicine.  Hospitals send them their quality and safety reports, and Leapfrog gives them an A-F grade based upon their reporting. The best hospitals are brought to this annual meeting to receive their award.

So, Wendy was given an award in front of representatives of the best hospitals for quality and safety in the nation.  Think on that for a second.  If you could tell three hundred people who have the power to change the day-to-day  operations of a hospital, if you had their undivided attention, what would you say to them?

Here’s what struck me about the day.  Everyone in the room was trying to make healthcare better.  Everyone was worried about the cost, the consistency, and the safety of healthcare.  But most of the people were looking at it from the institutional side of it, the bean-counting side, if you will.

Wendy’s story was one of a few individual stories of patients who were empowered to make change in the medical world.  The most prominent story, however, was the keynote speaker, Epatient Dave, who talks about patient engagement and empowerment.  His TED talk is one of the most viewed talks in history.  I highly recommend it.   He empowers patients to know their health history, and to connect with each other.

Another parent was there winning an award, named Becky White, is also the parent of a medically complex child.  Not 0nly did she go back to school to get her nursing degree, but she went back again to get her MBA.  She stressed that as a parent of a medically complex child, that she needed to know how to speak three languages:  the language her child would understand, the language the medical world would understand, and the language that the business world would understand.  She invites hospital administration to round with her when she is taking care of children so that they understand what is necessary for caring for a medically complex child.

Another parent, Liz Minda, is an advocate for her child who has had over 11,000 seizures in her lifetime.  Liz advocates for medical marijuana, and has spoken to media and legislatures about its impact on her daughter’s health.

You can read about both of these women here in the PVI press release.

It took me some time to process the whole day.  There was so much information, so  much intention by everyone in the room to improve health care, that it was hard to keep it all straight.  I took copious notes.

What struck me about the other patients and parents, though, was that they were both empowered and impatient.  They were there because they were creating change.  Wendy and I were there because we wanted change too.  The kids in these stories are extreme cases, but they don’t have to be, they don’t have to be the kids who are frequent fliers in the hospitals.  I think, though, that the amount of time our children spend in the hospitals make us as parents want to make the entire medical experience better.

Some people write books about their experience; some write blogs.  Some people speak at TED talks.  Some people create cartoons.

What can the average person do?  That’s what I was thinking about last night. Does it have to be such a grand gesture?  Of course not.  Those things get noticed, surely, but lots of good can be done without a media blitz surrounding it.

I came to this idea of the Patient and Family Advisory Council.  It is a council at hospitals that really bridges the divide between patients (or families) and providers.  Let’s say a family has an experience at a hospital and they know a way that it can be improved.  For example, a family notices that there are no pediatric wheelchairs.  Where can they go to get them ordered?  The Family Advisory Council.  A family notices that the pain medication that was prescribed in the Emergency Department doesn’t transfer up in the orders when they reach the floor.  Who can they tell?  How do they create the change?  The Family Advisory Council can point them in the right direction.

When Wendy and I wrote the story for the Emergency Department Cartoon, I brought it to the Family Advisory Council to help me figure out what to do with it.  The co-Chair of the FAC, Sandy Clancy, helped me to create a committee of people who needed to see it to approve the content, including doctors, nurses, social workers, child-life specialists, psychologists, you name it.  There would have been no way for me to know whom to contact or how to do it.

Likewise, the Family Advisory Council is a resource for the hospital as well.  Different departments come to us for advice about any variety of things.  New blueprints for new departments are brought to the FAC to see if they have any suggestions.  FAC members review and edit information that is given to the public. Parents speak to residents on their first day in their new job about the importance of bedside rounding.  We even sponsor a Grand Rounds every year about family centered care.

I wrote a piece about family advisory councils for Courageous Parents Network a few months ago.  You can read it here.  (It lists me as Casey Daniels, though.  🙂

If you want to be a part of a Family Advisory Council, contact your hospital and see if they have one.  Usually there’s an application process.  If your hospital doesn’t have one, consider starting one.  The Institute for Patient and Family Centered Care has created a whole series on how to start an FAC in your area.  You can look at their information here.

In conclusion, though it’s not exactly important what I said at the conference with 300 quality and safety people in it, since I posed the question, I will tell you what I decided to say, concerning the cartoon.

I said, since we all arrived by airplane and every airplane in America has a safety introduction before they take off, everything from fastening your seatbelt to what to do in the event of a water landing, why don’t we have introductions to every Emergency Department in America, when people are sick and scared and hurt?

Though it may not change anything, hopefully it gave people something to think about on their flight home.

 

 

 

 

 

Support For the Holidays

There has been a news story going around, about a group of NICU babies that got Halloween Costumes.  It really will melt your heart, have a look:

nicu-superman_1477867155679_6674201_ver1-0

http://www.abc10.com/life/these-tiny-babies-in-tiny-costumes-in-nicu-will-melt-your-heart/344400254

It’s been rolling around in my head this weekend though, why do people go to the trouble to dress up babies who will have no memory of such an action? What motivates them to take their precious time and energy to do such a thing?  Because, really, it’s not helping the babies at all.

The answer is that it helps keep the morale up of the parents.  Imagine being a parent in that situation, waiting for your premie to gain enough weight to go home, it’s like watching paint dry.  But the world goes on without you while you’re waiting and it’s easy to feel down around the holidays because not only is your kid in the hospital, but your kid is in the hospital on a holiday.  So are you, the parent.

One year, 2007-2008, we were in the hospital for every major holiday:  Fourth of July, Halloween, Thanksgiving, Christmas, New Years, Wendy’s birthday, and Valentines Day.

I’ve got to tell you, it’s really hard to be in the hospital during all of those holidays.  I did not cry much while we were in the hospital, but I remember crying on both Thanksgiving and Christmas Day that year, because the hospital was the last place I wanted to be.  I’m not the kind of person that thinks, “It’s not fair,” but that year, that’s EXACTLY what I was thinking, sitting next to my daughter’s hospital bed while even the staff was going home for holiday celebrations.

Mostly, it’s hard because you’re helpless.  For the big holidays like Christmas, it’s hard because it means that your kid is really sick. They try to clear everyone out for Christmas.  And it is hard because you remember how nice those holidays were in past years.  The truth is that if your kid is really sick, they don’t really notice the difference, because one sick day runs into the other.  It’s the parents who keep track of the days.

For Fourth of July we saw the fireworks.

For Halloween, we had to drape Wendy’s costume over her because she had just had an abdominal surgery.  She was going to be Fiona from Shrek.

For Thanksgiving, We ate Thanksgiving in the playroom on real china that the Child Life Specialists set for us.  Wendy was unconscious.

For Christmas, Wendy got presents and a visit from Santa.  There were some special toys like build-a- bears.    We had Christmas lights in the room that we took down every day and put up every night so we didn’t get in trouble.  The nurses knew but didn’t tell anyone.

For New Years, we saw the fireworks.

For Wendy’s birthday we had a cake, no candles, because of the fire hazard.

For Valentine’s Day, there was pizza and valentines in the Family Lounge.

I know people who feel down around the holidays, because loved ones are now gone or because their kids are grown and out of the house.  I would encourage you to contact your local hospital, especially pediatrics, and see if you can volunteer over the holidays.  You have no idea what the smallest gesture can do to make a family feel better, one who has been in the hospital for a while.  I would also encourage you to find a way to go in and volunteer in person, and see the grit and determination of these kids who are fighting so hard to get well and who are resilient and kind.  You might get  a lot out of the experience as well.

Today is Halloween.  You have the time you need to contact your local hospital in time for the holidays.  Yes, we all get busy during the next eight weeks, but imagine all that busyness and having a kid in the hospital. It makes our problems look easier, doesn’t it?

If you do volunteer,  let me know about it. I love to read these stories.

Cover Photo:  Wendy, almost age 4, on New Years Day.

 

 

 

What If I Don’t Know the Answer?

For a number of years now,  I have had  the honor of speaking to the brand new residents at our hospital.  These are often young doctors who likely graduated from Medical School, top of their class, in May.  I speak to them sometime in the third week of June, giving them enough time to pack all their worldly goods and travel to their placement between graduation and new residency.  They begin seeing patients sometime around July 1st.

A large proportion of these doctors do not have children of their own.  So they are experts on the anatomy and physiology of a child, but not necessarily experts on how to talk to them, or how to talk to their parents.

I get to speak to them on their first full day.   It says a lot about the administration of Massachusetts General Hospital for Children, that on the first day of the new residency, these new doctors speak to parents.  It sets the tone that the hospital is committed to family centered care.  It means that they are serious about good communication between doctors, patients and parents.

Every year, a few of the parents from the Family Advisory Council go together to this rather informal discussion.  We all introduce ourselves by way of our child’s illness.  We are what is known as “frequent fliers” in the hospital world, or kids  who are often in the hospital.

On this day, the first day of residency, we talk about bedside rounding.  As its name implies, bedside rounding occurs around the child’s hospital bed.  Everyone comes in and has the discussion together:  doctors, the child’s nurse, a pharmacist and the family.  The lead resident gives an introduction about the child and and her illness, and then discusses what they have done and what they need to do before discharge can happen. They will often discuss specific lab and test results.  Then they make a plan for the day, ask if there are any questions, and then move on to the next kid.

But it is a very different experience when doctors are talking among themselves and when they are talking to families.  Families haven’t gone to medical school, they don’t know the lingo.  They don’t know that afebrile means that the child doesn’t have a temperature.  They don’t know that emesis is vomiting. They don’t know what the thousands of maddening acronyms mean.  So the residents, who have spent all of this time learning all of these official terms, need to rethink the way that they report when the family is there.

The new doctors also have to deal with the fact that the parents, normally the ones who are in charge of every action and detail of their child’s life, are feeling helpless and scared.  That the child in the bed is also feeling that way, along with being in pain or discomfort.  The terms of the situation make matters worse.  No one is at their party best, so to speak.  Parents deal with this in different ways. Some parents don’t want to know anything technical, they just want the doctors to fix it as soon as possible so they can leave. Some parents want to know everything, down to every acronym and decimal point, so they can figure out what is going on.   Sometimes parents are hostile or sharp with the doctors as a defense mechanism.  Sometimes they burst into tears.  You never know what you’re going to get.

The temptation is to race through the bedside rounding, to cut corners, or to not answer all of the questions that the families have.  After all, these doctors are in charge of multiple children, multiple illnesses, hundreds of balls in the air on any given day.

We, the parents, are there to say that bedside rounding is important, even when it’s uncomfortable, sometimes especially when it’s uncomfortable.  We are a team, all of us, and we all need to be on the same page.

A team relies on trust.

Which brings me to my favorite question, that is asked every year:

“What if I don’t know the answer?”

These new doctors are used to knowing all the answers.  They are used to being the smartest person in any given room. They have encyclopedic memories.  They have been tested and they have been victorious.  But what happens if, for some reason, they are caught off guard and don’t know what the answer is to a question that a parent or a patient asks?

They are afraid that they will look like a fraud.

But who in the world knows all the answers anyway?  That’s not why they are there.  They are there to find the answers. They might not know them all.  And if a team is built upon the mutual trust of the participants, it is up to the doctor to say, “I don’t know the answer to that, but I will find out and get back to you.”  And the key is to follow through and do that.  They will win the respect of the family if they make that combination of confession and commitment to the truth.

It’s important to say one more thing, and we as parents say this every year too.  When we are all together in the hospital room, we are modelling behavior for our children. We are showing our chronically ill children, who will one day grow up and have to speak to doctors all on their own, how to be empowered to do so.  We are showing them that trust in medicine is important, that integrity is important, that bonds form when everyone is present in the discussion.

It is important to parents of chronically ill children to address the issue, try to fix it, with honesty and integrity, and to model this behavior for our children.  If you think about it, that’s the way life should go, but especially within the confines of a vulnerable situation like a hospital room.  Everyone needs to feel heard, everyone needs to feel respected, and great things can happen.

 

 

 

 

“A Difficult Decision Was Made”

A room full of people, a room full of stories.  That’s what we encountered the other night.  It was the opening ceremony of the Transplant Games in Cleveland, Ohio.  Attended by over 6,000 people from 40 different teams around the country, there were recipients, living donors and donor families, a term given to those who lost loved ones and even in their time of acute grief, decided to donate their loved ones’ organs and tissue.  You can read the open letter I wrote to Wendy’s kidney donor’s mother here.

The emcee for the evening started the event by saying, “We are all here tonight because a difficult decision was made.”  It’s important to get it out there right away, because it was the elephant in the room.  Everyone was there because of a donor.  Now there are living donors, and that is no small feat, someone who willingly gives a piece of themselves, literally, to keep someone else alive.  They are not only honored at the games, but they are invited to compete as well.  More than that, however, are the donor families that need to be honored for their loss.  Lives were cut short, and lives were extended.  Just because it is a celebration of life, hell, the name of the event is the Donate Life American Transplant Games, doesn’t meant that there aren’t hundreds of people hurting because they have lost someone whom they loved. They wore their loved ones on pins, they posted their pictures on placards, they wore necklaces.  I spoke to a woman who told me all about her son who died when he was in his early twenties, and she said to me, “His friends are all getting married and having kids and I miss him every day. Every day it hurts.”  The emotions will always be raw for them, but it helps ( I hope) to have them see that their loved ones helped to extend the lives of so many more.  That’s what the games are all about.

This was the first time we went to the games and I had to really think about what we were going to say about donor families and what “giving life” really means.  Before the opening ceremonies we talked a little with the kids about Wendy’s donor and how he died and how his parents decided to donate his organs, and that it was likely that they were going to hear a lot of those stories tonight.  The stories would be emotional, but they are powerful and important to bear witness to them.  And, of course, we could talk about it after if they had any questions.

But this is hard stuff.  Life is messy.  This topic is something you don’t often talk about, and here we are sitting in a room full of people, an AUDITORIUM of people, talking about it.  When a story came up on the screen about a father who donated his son’s organs after he had an asthma attack, Penny leaned over and said, “This is one of the stories you warned us about, Mom,” as she held my hand.

Here is the thing that goes along with this knowledge, that people died and their organs were donated:  Palpable gratitude.  An auditorium full of grateful people:  recipients and those who love them.  Families and friends.  Whole teams of people who have gotten together to celebrate this extension of life.

And these people are competing and attempting sporting events they might not ever have done before, because they were given a second chance.  I have lots more stories, there will be more blog posts about these games because I’ve learned a lot in the past few days about  community through resilience, about the power of multiple generations coming together, about giving voice to the pain and the grief and the gratitude all at once.  About how your story is just a part of the thousands of other stories, creating a mosaic of meaning.

I’m going to say one more thing before I close.  Register to be an organ donor so that your loved ones don’t have to make the decision.  Over and over again, I heard how much easier it was for them to donate their loved ones’ organs because they knew it was what the person wanted.

Don’t make your loved ones make that decision.  Make it for them, so they can just follow your wishes.

More to follow.

Photo:  The Auditorium at the Donate Life Transplant Games, waiting for everyone to arrive.

Don’t Count the Days

“Don’t Count The Days, Make the Days Count.”  This is a quote by the late, great Mohammad Ali.  There were a lot of amazing quotes by him, all dragged out this weekend when it was learned that he had passed away.  One of my favorites, though, was the “Don’t count the days” quote.

As you know by now if you’ve followed this blog, I’ve got a chronically ill kid, who has gone through various stages of wellness.  When we were waiting for a kidney transplant, we decided to move closer to the hospital.  Wendy was on five different blood pressure medications and a medication for her heart.  Besides that she had medications to help her kidney function, and of course, she was a diabetic.  So, in a nutshell, she took fourteen different medications in a day, by different routes (patches, oral medication and injections), in different combinations, about every two hours, around the clock.

She was four years old.

You can imagine my shock, dismay, and utter fear when she decided that she wanted to play soccer.

We didn’t know if we could do it.  Could we manage  the medical part and keep her safe while letting her play soccer?  Was it even possible?  Could we emotionally handle it, knowing that her body was already going through a ton of modifications just to keep living like a normal kid?

It would be so much easier for everyone if she didn’t want to do it.  But she wanted to play, she wanted to play BADLY, and we wanted to make it happen for her.

We spoke to her doctors and their answer was:  If she wants to, let her do it. Her body will tell her when she’s had enough.

So we did, with some guidelines in place.  She could play sports that weren’t a ton of contact…..so ice hockey, or football, or even gymnastics were out.  Of course we had her insulin and sugar at the ready.  We also had a glucagon with us, which is an injection in case she passed out. We had snacks.  We packed up her medications and gave them to her at her normal times.  We filled out the waiver with all of her medical history.  We agreed that one of us would always be at every practice, every game, every time.

We held our breath, and we let her go.  And, the child has NEVER looked back.  Here she is, three months from a kidney transplant, playing soccer:

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She got her kidney transplant.  The next year,we found out that she was fast.  In fact, she won first place for her age group for the mile run the first time she ran:

Wendys first run

Which eventually led to the swim coach asking her if she wanted to swim competitively, and guess what? She did.  Guess what else?  She was good at that too.  Here she is with her continuous glucose monitor on her arm at the suburban championship, where she placed first for the backstroke:

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Oh, and did I mention that my kidney transplant recipient, diabetic child decided that she wanted to do triathlons?  Yep.  She won those too:

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The point was, and still is, that these things terrify me.  Truly.  But Michael and I have never put limits on what she can do.  If she wants to do it, if she wants to try it, we are there as a team to support her.  And she has shown us, over and over, that she is a tough competitor who has this inner drive to succeed.

And we are there, every practice, every game, every time.

It’s a huge amount of support.  Wendy isn’t a drop and go kid, I can’t run errands or go to the supermarket while she is playing.  I have to be there.  And when she goes down, when there’s a problem, I totally want to rush on that field and take care of her.  But I take a breath and I let the coach handle it, and if the coach calls for one of us, we go over.  We do not keep Wendy like a china doll, because that’s never what she wanted to be.  She is making the days count.  We are making them count with her.

And I have to say, that Wendy has set a good example for our younger daughter, who also plays soccer and races in triathlons, who also is tough as nails and who wants to be just like her big sister.

I’ve been reflecting on this because this week we will be traveling with Wendy to the American Transplant games in Cleveland, Ohio.  This is our first venture into the national scene of competition for Wendy. It’s like the Olympics for transplant patients.  I want her to do well, but I’m also just so grateful to be going, to be a part of it, because it’s what Wendy wants to do. She is a competitor, she is a fighter.  She always has been.  And we will be there to support her.  I imagine that I will have a lot of reflections from the American Transplant games. This is just the first.

Don’t count the days, make the days count.

Photo at the top:  My girls after a kid’s triathlon, enjoying some ice cream.