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.

 

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Happy Birthday Wendy’s Welcome!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Communication & Hope, Thanks to Hospital Chaplains.

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

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

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

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

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

Bertie Bear

This is Bertie Bear.

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

White Board with Emotions.PNG

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

Now imagine if you couldn’t speak at all.

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

Spiritual Care Board.PNG

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

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

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

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

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

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

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

 

 

The Cost of Living Vibrantly

(I came across this piece this afternoon, written when Wendy was 10 and Penny was not yet 5.  It’s funny, a few things have changed, but the core message of how we approach life has not  Enjoy.)

What is the cost of living vibrantly?  Living the life you want to live, with travel, adventure, love, laughter, good food, gratitude?  We all know the draw to living vibrantly: it’s living with your whole heart.  Who doesn’t want that?  But what are the costs?

I have a chronically ill child, Wendy.  She’s immune suppressed, thanks to a kidney transplant, and she has a constellation of added health complications like diabetes, abdominal surgeries, histories of high blood pressure and heart failure.  You wouldn’t know it to look at her.  She’s the fastest kid in her school, running the mile in under seven minutes.  Last week she placed third in the back stroke at her swim meet.  She’s run in races and triathlons.  She also plays two instruments, the violin and the trumpet.   And above all of that, she’s a funny, sweet, sensitive kid, a good big sister to our younger daughter Penny, a good daughter to us.  She tries very hard to be honest and fair, which is all her father and I ask of her. She is the definition of vibrant, she lights up a room when she walks into it.  People gravitate to her energy and her easy smile.  All this in a ten year old body.

Many years ago, when we were initially faced with her diagnosis and health complexities, Michael and I decided that we would do everything we could to make Wendy’s life as normal as possible.  She would go to public school instead being homeschooled.  She would play sports if she wanted to.  Michael and I know that we have to be present at all of these activities in case of exhaustion, low blood sugar, or if she’s just out of sorts.  Sometimes it’s a little grating on the nerves, it is often exhausting, but I always maintain that you don’t know what you signed up for when you agreed to be a parent and all of these difficult, time consuming things are a part of the package.  That’s it, the end.

We know that with every decision, we make a calculated risk.  We no longer eat at buffets or have “public food”, food that has been sitting around for fear of contamination or food borne bacteria.  We are fastidious about hand washing and not sharing food or drinks.  We love to travel, but when we do, we have Wendy wear a mask on the plane and bring our own pillowcases for the hotel room. We appreciate when friends tell us they are sick or have sick kids, and we avoid them, if you’ll excuse the pun, like the Plague.  These are our only defenses against unforeseen illness.  We know that they are not perfect and they don’t always work. We don’t keep Wendy in a bubble, nor do we want to.  We try really hard not to stifle her exuberance.  So, sometimes she gets sick, a side effect of living a vibrant life.   Looking back we can often see the warning signs, but might not be paying too much attention:  blood sugars going awry, a cough, some diarrhea or maybe an upset stomach, sometimes a headache.  Do these seem vague? Could they just be a tough day, a miscalculation? At what point do the small signs lead to a big problem?   Or maybe they just fade away, like most kids on most days.  A good night sleep and a band aid on the boo boo and send her on her way.

Sometimes, you can see illness coming, seeping through Wendy’s immune system, and as a parent, you can’t help but worry.  Here is a good example.  We went to Colorado over Christmas.  We normally try to avoid winter travel because of all of the pervasive illness, but we had not been to Colorado during the winter as a family in over seven years, and skiing is Michael’s favorite thing to do, so we decided we would give it a try, knowing that every day of skiing she would be with us, and not with a ski school, knowing that there would be some down days.  It’s all part of the territory.   We mapped out where the nearest hospitals were that could treat Wendy, even including the possibility that we would be snowed in and the passes would close.  We had a Plan A and a Plan B. We had her medical letter packed along with all of her medication and additional supplies.  She wore a mask. We had the pillowcases.  We crossed our fingers and held our breaths and got on the plane.

The day we arrived, my father in law, with whom we were going to stay, came down with the flu and pneumonia.  He had been travelling to South East Asia and ended up with a nasty combination of illnesses, even though he had gotten the flu shot.  Not only did he feel awful physically, but it nearly broke his heart that we had to change our plans.  We were to have zero contact with him while he was sick.  Naturally, we had to change our arrangements as to where we were going to sleep for ten days, not an easy feat at a ski resort over Christmas break.  We ended up staying in three different places, and only saw my father in law on the last two days when he had finished his Tamiflu and antibiotics and seemed to be doing better.  But we had also been on planes and in airports, at restaurants and ski resorts, with daycares and group lessons and in tiny little gondola cars with people from around the world.  Hello, germs, let me introduce you to my immune suppressed kid.

A few days after returning home, my four year old, Penny, developed a cough.  Not a big deal, kids do that, they get snotty and coughy and life goes on.  Well, two  nights after that, Penny developed a fever of 101.7, which is significant but not alarming, and we just kept her from school, tried to keep the girls apart as much as possible, and went on.  By Friday night, Penny had a killer cough, one that you know just doesn’t sound right, so she went to the doctor and it turned out she had pneumonia, but not the flu.  She was put on antibiotics, and again we tried to keep the girls apart.  Wendy had even stopped using the same bathroom upstairs, “just in case” Penny had forgotten to wash her hands in the middle of the night.

That same week, Saturday comes and Wendy has a swim meet.  Michael goes with her because I’m staying home with the younger one.  He can’t seem to control Wendy’s sugars and the site where her insulin pump is attached is painful.  When they get home, we take off the pod (it’s a kind of insulin pump) and with it comes a glob of puss.  Uh oh.  I can remember when we put it on.  Wendy didn’t want to shower before the application like we always do, because she showered that morning, but we told her to quickly do a body washing shower and then we’d apply the pod.  Maybe she didn’t wash so well this time.  We applied antibiotic ointment, put a bandaid on it, put on another pod and sent her to her indoor soccer game.   Later that night, we squeezed it again, same result, same solution.  But she’s had staph infection before, it looks like a pimple, but it wreaks havoc on her body.  Look up pictures of staph on google and you’ll have nightmares for a week.

Monday morning Wendy woke up with an upset stomach and cough.  Her sister was staying home already, so I suggested to Wendy to go back upstairs and try to get some sleep.  Usually, Wendy can never get back to sleep, she hasn’t been a napper since 18 months and she has a hard time sleeping at night.  She usually goes to bed at her appointed time and then reads for another hour or two, and then wakes up with the sun.  Monday morning, however, I went up to check on her and she was sound asleep.  I checked but she had no fever.  When she woke up, she has had a few bouts of diarrhea.  And she still had an upset stomach and a cough.  She was pale and less than her energetic self.  She was not normal, and yet, she was not particularly sick either.

Maybe it’s staph.  Maybe it’s pneumonia.  Or both.  Or neither.  Maybe, but not likely, it’s something else entirely different.

It’s the strangest feeling in the world:  waiting for your child to get sick enough to go to the hospital, but there I was.  Waiting for something more, or something less.  More means something we can go on, call the doctors, get blood work, think about going to the hospital and getting admitted.  Less is that she’s well enough to go back to school the next day.  We want less, but we can’t control more.  What does one do on a day like that day?  I found myself making lots of food:  two quiches in the oven, two corned beefs in the crockpot.  I checked on my toiletry bag to make sure it had everything that was necessary.  I had not gone so far as to pack a bag for the hospital, but I had organized in my mind what I would take if we needed to go.  It’s an odd place to be in my mind.  I actively avoided making any plans for later in the week “just in case” and I warned work.  Mostly, I just worried and watched my two girls, keeping track of who ate their lunch or who coughed which time.  I spent a lot of mental energy worrying, and tried to put a lot of things in perspective.  It’s just another small illness.  We’re a team, we are going to get through this together.

But it’s hard, this waiting, for something, for nothing, for an answer.  And I worry about what Wendy’s anxiety might be, she who may be going through the pokes and prods, the blood draws and the chest X rays, the uncomfortable hospital beds and the bad hospital foods.  And then part of me is mad, really angry for thinking about all of that, for not crossing that bridge when we get to it.  The truth is, though, that we’ve crossed that bridge so many times that it’s become a rather well worn path and it’s an easy place to go to in my mind.

In twenty four hours we would know.

The middle of the night she spiked a fever, 102.4, and we knew that we were going into the hospital.  Our hospital home is Massachusetts General Hospital.  I remember when we first were sent there from Dartmouth in Hanover, New Hampshire, when the attending told me that was where we were getting transferred, I asked if it was any good, and he laughed.  It’s only one of the best in the world he told me.  We have been going there now for almost seven years, and yet it still surprises me when a doctor or nurse recognizes us.  After all, when you walk into an emergency room that services thousands of patients a year, you don’t expect the triage nurse to say, “Oh, hi, the kidney transplant patient, right?”  I don’t expect the Pediatric Attending of the Emergency Department to say, “Hello, Darcy.  My name is  _______.  I treated your daughter years ago.  I’m sorry you are back but it is nice to see you.”

After deliberation between the doctors and tests that need to be done, a basic plan is set into place, and that usually includes hospitalization for observation.  No one is going to send an immune suppressed kid home with a 102 fever.  No one.  So we settled in for the inevitable.  The wait.  The transport.  The room on the pediatric floor.  We always know we are staying when she gets and IV port.  That’s the ticket to upstairs.  It’s the first to get put in and the last to go before you’re released.  It’s like a passkey, you don’t get in without one.

We have been in dozens of hospital rooms, and yet they are all the same. The colors are soft, never overbearing, never what someone might call offensive in any way.  The floors are always clean looking.  The cabinets are made of some kind of laminate; they could never be considered a masterpiece of natural wood.  The tables and bed stands roll for ease of movement.

We fall into a regular pattern for the day.  Doctors come first thing in the morning to examine Wendy.  They poke and prod and press on her belly, they ask her if she is in pain, they listen to her heart and lungs, they look at the monitors.  Then they leave.  Nurses come in the first part of the day for weighing and measuring, for giving daily medications.  Then breakfast, some sort of protein like a hard boiled egg, sometimes a strip or two of bacon.  Wendy always orders a sugar cereal that she would never in a million years get at home, and I let her because I think to myself how many pleasures will she get in this day, how many small victories?

We see staff members, the woman who brings the breakfast, the man who cleans the room, the Child Life Specialist asking what Wendy might like to play with that day.  Sometimes there’s a special event like music therapy or a visiting sports team or therapy dog, and I find that I’m grateful for the distraction, grateful to give something for Wendy to concentrate on other than feeling awful  and confined.

Then there are rounds, where a whole swarm of doctors come by and report on Wendy.  If she is there for a long time, they give the whole history, and for those who have not heard the story, I watch to see them mentally calculating all of the complications and things that can go wrong.  There is something disarming about watching young, smart doctors think through a problem. Sometimes when a young resident is reporting and doesn’t know the answer, they have to refer to their notes or the computer that is brought along on a rolling stand.  If the attending physician is upset with that young doctor and they feel it is something he or she should know off the top of their head (and if the attending knows me and my head for numbers) they will say to the young resident, “Ask the mom, she knows the answer,” and I recite Wendy’s creatinine, or her BUN, or some other number from her drawn blood. I can tell you all of Wendy’s medications in doses and milligrams, I can tell you her insulin to carb ratio and how much fluid she is required to drink in a day.   I don’t mind being used as an example of a good mom, but I do feel badly for the resident who is slightly embarrassed.  A plan is then made for the day, I push for definitive times and actions, and sometimes get answers.  They know that I will keep asking until the definitive answers are provided and they respect that, many of them thinking that it is what they would do if in my place.

A hospital room is more about what it lacks than what it has.  It lacks any sort of comfort or human warmth.  It lacks background music.  It lacks pictures on the walls, or pictures in frames.  It lacks a comfortable down pillow or a duvet cover.  It lacks plants or any other living thing.  It often lacks happiness, it often lacks laughter, and it often lacks children, at least healthy children, at least children who are healthy enough to joke and dance and sing.  There are very few hugs because of all the tubes and wires that are hooked into Wendy.  There are a lot of sighs and shifting and worrying.

It is not comfortable.  It is not meant to be. You are never fooled into thinking that you are home.

The most difficult times in a hospital are in the afternoon, when no one comes to visit, when doctors are writing their notes and nurses are taking their lunch breaks, and all I can do is sit next to Wendy and watch TV with her, or watch her fitfully and uncomfortably sleep while I look out at the world.  If we are lucky, we have a room on the river, which is beautiful, especially at sunset.  I try to think of the good things like watching the Duck Boats in the water, seeing the runners along the paths, sometimes seeing the rowing crews and their darting precision.  I try very hard not to think about what I am missing, what Wendy is missing, in that outside world.  Sometimes, though, the thoughts creep in.  I try to keep these thoughts at bay by making future plans.  This last time we were in the hospital we made a list of all the people we wanted to come to our party to celebrate the 5th anniversary of Wendy’s kidney transplant, what we called her “Kidneyversary.”  It helped us keep perspective.

Then it’s late afternoon and shifts change.   A new nurse arrives and does vitals.  Doctors visit before they go home to families and dinners and soccer games.  A plan is made for the evening and if we are lucky, we get a forecast for the next day.  Then maybe I play a game with Wendy or take a trip to the toy room.  Sometimes a volunteer will come in and I can take a break, get a cup of coffee, walk a lap around the hospital complex, make a few calls to my parents and best friends to give them an update.

It’s hard to know how many days we will be in the hospital, but I know that the doctors try to get us out as quickly as possible.  They monitor everything. I know Wendy is getting better when she starts to complain that the hospital is boring, that their water tastes funny, that the food is gross.  She gets restless.  We begin to lobby for release, and it’s more like a negotiation with the doctors.  IF Wendy’s labs look good and nothing grows, IF she can eat and drink normally, IF her fever starts to trend down, IF she can take oral instead of IV antibiotics.  We set goals, we make Wendy a part of them.  We push and the doctors push back.  This is part of the game we all play.

Finally, the  doctors decide to discharge us.  Then we wait.  For the medications.    The coordination.  The final orders and the follow up appointments.  The last thing to go is the IV port.  We know when that is out of her arm that we are really going home.

When we are released, we turn the music up loudly in the car on the way home. Once we are finally home, we all strip down out of our clothes and wash everything we brought to the hospital whether we wore it or not.  I make spaghetti and meatballs and Wendy requires a salad every day for a week with balsamic vinaigrette and kalamata olives.  She takes a long, hot soapy bath and we scrub off the adhesive from the bandages.  We snuggle down in to her bed with her stuffed animals and read stories.  We all go to bed early and sleep in the next day.

After all of these years in the hospital with Wendy, I find that I continue to be terrified with every unexpected trip, not knowing what brought us in this time, what micro-organism or virus or part of her body is malfunctioning.  The part that is easier is that we know a whole cadre of doctors and nurses who know and like us, who stay for a while to talk, who hug us when we leave.  We know the names of their children and where they are going on vacation.  All of these things add up to the knowledge that they are going to do the best they can for Wendy, they know her well, know her history, know us as her parents.  I am confident in their abilities, I trust them and that can go a long way toward comfort and one less thing to worry about.

So what is the cost of living vibrantly?  For Wendy, it’s the same cost.  She will go into the hospital when she gets sick.  But she would anyway, even if we kept her in a bubble. We have no way of knowing if she would go into the hospital more times or fewer times if we kept her sheltered, but that’s not the point. The difference is the outlook.  We are helping her live her best, most authentic, most exciting life.  As the parent of a chronically ill child, worry is a part of everyday life, and trips to the hospital are inevitable.  Being prepared, mentally physically, and emotionally is all I can do.   But we choose not to let our fears make our decisions for us.  The rest is up to chance and that is never easy to accept.  I wish that I could control it all, but it’s not possible.  So instead we live the way we want to live, and we teach Wendy to do the same.  Perhaps that is freedom.

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.

Compassion is Sometimes Foreign

A while ago, I was at a dinner sponsored by The Schwartz Center for Compassionate Care.  It was a dinner for all of the Patient and Family Advisory Councils of Massachusetts General Hospital.  We have eight of them, and so the room was quite filled with not only patients and families, but with administrators at all levels.

Unknowingly, I was sat next to the moderator who stood at the beginning of dinner, and asked us all to think of a  moment of compassionate care.  Then a runner went around the room with a microphone where people could share their stories.  And all of the stories were good ones, small acts of kindness that at the time made the pain of the moment more bearable.  We all have had those moments.  The truth is, I have a hundred stories of compassionate care, but I had chosen one of my favorite stories, one that truly went above and beyond.  It was the first one I had thought of.

I had no intention of sharing it with the larger group.

But the  moderator, at some point in this discussion, asked the microphone runner to come up to her, and then she looked at me and said, “Darcy, I bet you have one that you can share with the group.”

Busted.

So I stood up, and here is the story I told:

“My daughter, Wendy, was born healthy, but had an infection that shut down the small blood vessels of her body.  She spent over 180 days in the hospital.  At the time we were living in a small Vermont town, but we had to move down to the Boston area to be closer to the hospital, especially once we knew that Wendy needed a kidney transplant.  So once we moved, Wendy’s nephrologist, after Wendy’s [outpatient] appointment was over, looked at me and asked me how Wendy was doing with all of this, how we as a family were doing with all of this.

“I answered that our apartment was fine, transportation to and from the apartment was good, but I was worried because Wendy had no friends.  She couldn’t go to preschool because she was so medically compromised, and she had been in and out of the hospital for so long that she really didn’t have any interaction with any kids at all.

“The doctor looked at me, was silent for a second, and said, ‘I have a daughter.  She’s only a few years older than Wendy.  Let’s have them meet.’

“And so, maybe once a week for a number of weeks, we would meet at the Playground by the Frog Pond in Boston Common, and Wendy would play with Ashley.”

You could hear gasps in the banquet room.  Maybe because this was so unusual, maybe because it was so special. It wasn’t medical, it was emotional.  I wanted Wendy to have a friend in this new place where we lived.  Wendy’s doctor, as a mother, understood exactly what I needed, what Wendy needed.  She needed to feel like a normal kid.

Would it surprise you to know that I was asked to retell that story many times over the next few months?

I’ve been thinking about this doctor a lot lately.  This doctor, who when she goes on vacation, often will come back with a present for Wendy. This doctor who brought a snow globe for Wendy to hold while she got wheeled into the operating room when she was getting her kidney transplant.  This doctor, who when Wendy got air lifted  to the hospital while in heart failure and I couldn’t go on the helicopter with her, this doctor called me on my cell phone and told me not to worry, she would be there to meet the helicopter while Michael and I drove down from Vermont.  This doctor, whom recently when Wendy had an MRI and they told us it would be a week until they let us know (if Wendy had a brain tumor or lesions) went down herself and badgered a radiologist to read it with her, and then called me to tell me it was clear.

This doctor.  This doctor is an immigrant.

She is an Indian woman, Dr. Sharma.  Her accent is incredibly thick and she talks a mile a minute.  Her grammar and syntax are sometimes laughable.  She uses idioms wrong, like instead of saying, “You are between a rock and a hard place,” She would say, “You are between two hard places” and your brain has to figure out what she meant while she plows on with her rapid speech.  This doctor, whom the first time I met on the other side of Wendy’s bed in the PICU spoke so quickly and with such a thick accent I despaired that we were doomed because I hadn’t understood a word she said.

And yet, today, I can’t imagine our lives without her.

Shock waves went out among the medical community this past week with the new travel ban and executive order to build a wall along our southern border.  The truth is, the United States Medical system relies on immigrants.  Hospitals have had to scramble to figure out exactly what they are going to do, because the new President has made it very clear that his “America First” makes all immigrants suspect.  And yet, more than 25% of all physicians in the United States are foreign born.

So is America First just a slogan?  Does it mean America First with fewer immigrants, or does it mean America First with the best medical system in the world?

It seems to me, in a country that was founded on immigration, you need the best minds working on the hardest problems in medicine, in science, in public health.

No matter their country of birth.

 

 

Our Kids Inspire Us

Often times, it’s our kids who inspire us.

They don’t know that they’re supposed to feel bad for themselves.  They just want to feel better so they can get back to being kids.  They bounce back quicker, not just because they are young, but because they want to move forward, they want to get past their illness.

They don’t dwell.

Even if they’ve had a crappy day, a day filled with pain and anxiety, with pokes and prods and tests and sticks, even after surgeries, or chemotherapy, or dialysis, or injury, they go to sleep and the next day they re-evaluate.  If they are better, even just a little bit, you can tell because their eyes are clearer, their smiles are wider, they want to do more things.    We as parents help them celebrate small victories, marking their progress the way we mark their height in tiny increments on the kitchen wall.  We are their cheerleaders, and they are our heroes.

SickKids in Toronto has launched a new ad campaign called “VS.” It’s a moving video showing sick kids versus their illnesses. It shows kids as knights, or prize fighters, or motorcyclists, or professional wrestlers.  It shows them beating the odds.  It is powerful because it manages to show you the steep hill they are climbing with these illnesses in a short amount of time.

Watch it here.  Have tissues ready.

The picture I’ve posted above is of Wendy.  Here, she is four years old.  She had spent over 100 days in the hospital, she was taking 14 medications in different combinations, every two hours.  She was on five blood pressure medications, and she was getting up to eight shots a day of insulin. You might not recognize her because she had chubby cheeks because she was in kidney failure and one of her medications made her grow extra hair all over her body.   But just look at that smile.  That’s a kid who still played on the playground, climbed up trees, swam in the pool.

We just worked the medical stuff around her.

The other night Wendy and I were lucky enough to be invited to an event for the hospital, called the Storybook Ball.  At it, there were many people who had heard of her video and came up to her, both to tell her that they had cared for her as a patient, and that they were inspired by her video.  It couldn’t have been possible without the Architectural Firm Payette, who led the way through the whole cartoon.  They utilized all of their extra talents, the ones they don’t use every day, to create this video.  Wendy inspired them, and they created an inspirational work.

They have written about the video from their perspective, and you can read that on their website.  It is fair to say that it is impossible to thank them enough.

One of the sweetest moments since the release of the video last week, was a short email from an Emergency Room Attending Physician.  She wrote to say that she was already using it with her patients when they arrived and that it seemed to be entertaining and calming to them.

It’s so amazing to know that after all that time, after all that work, that it’s going to make a difference in the life of kids who are in pain.  It’s actually working.

This kid inspires.  Lots of kids inspire.  They teach us to keep moving forward.

I’m going to end this rather short post with one of my favorite quotes, one that reminds me of lots of kids like Wendy, lots of Brave Fragile Warriors:

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.”
Mary Anne Radmacher

 

You Are Here! With Wendy!

The Cartoon has been completed and sent to the hospital!

(If you don’t know what I’m talking about, you should read the #projectW blog post first.)

After over two and a half years, through multiple drafts, multiple meetings, and multiple mediums, we have a finished product that will (hopefully) benefit young children and their parents.

Picture this.  Your kid gets hurt, to the point where you need to go to the emergency room.  Your child is in pain, and is scared, and is nervous.  Do you know what is going to happen?  Probably not, because not many people spend a lot of time in the Emergency Department.  So you as a parent are also stressed and wondering what is going to happen.  Most stress in the hospital happens in the waiting room of the ER.  So how can that be alleviated?

Wendy and I wrote this little story with that in mind, giving an introduction to the Emergency Room and to the hospital in case the child gets admitted.  It runs about nine minutes long, enough time to get settled and have your questions answered.  It also gives you some suggestions on how you can prepare yourself for when you meet the doctors.  You can write out what hurts, when it started, what you’re worried about, how you feel, and it will get the conversation going more quickly.

So it’s designed to alleviate stress and foster communication.  Imagine if all hospitals worked on ways to incorporate these things into their care scheme.  We had whole teams on this project, both in the hospital and at Payette, an architectural firm that specializes in hospitals.  In the hospital, the Family Advisory Council brought together a group of experts to comb through the script.  There were doctors, nurses, social workers, and child life specialists, who all added their advice and counsel.  Then at Payette, there was another whole team of creative people who put it together.  There were animators and musicians, people who were good at the storyboarding and composition.  There were people who spent Saturdays recording Wendy’s voice and teaching her some elocution so she could enunciate well.  They made sure they included Penny in one of the pictures (that’s Penny getting the thermometer over her forehead!) and they included Wendy’s stuffed animal Teddy who has been through all of the hospitalizations with her.

And get this, all of these people did this out of the goodness of their hearts.  Nobody was paid for a moment of any of this, through months of preparation, meetings, and work.

They did it because they thought it was important.

Think about it another way.  Every time you go on an airplane, you get instructions on what is going to happen during the flight, including what might happen in an emergency.  Do you get the same instructions when you go into the Emergency Room?  Why not? Wouldn’t you feel better, as an adult, if you did get some instruction or information while you were waiting to be seen?

Now imagine how much scarier it must be for a kid to be hurt and worried.

Here is my hope.  My hope is that this post and video go wild, that it helps thousands of sick and scared kids, that it inspires other hospitals to do the same thing.  I hope it encourages collaborative efforts because they are important, not because someone is going to get all the money or all the credit associated with it.  My hope is that there are fewer sick and scared kids, but when they arrive to Emergency Departments around the country that they will be given an introduction on what they can expect so they won’t feel so lonely and vulnerable.

Please watch this video.  Please think how many people put their hearts into this production.  Please share it widely.

https://vimeo.com/186454486

Thanks to everyone for your support through these efforts, including your kind words and suggestions.  Thanks for not letting me give up on it.

I asked Wendy what she thought about the whole thing, the more than two years, the different iterations, the meetings, the pictures, the recordings, and she just said, “I think it’s pretty cool and I think it’s going to help a lot of kids.”

She said it better than me, and in fewer words.

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.

 

 

 

 

Siblings of Sick Kids

This week, Wendy had four doctors appointments.  Four times we packed up and schlepped to a specialist or pediatrician.  Four times in the waiting room, four times for triage, four times in the exam room, five conversations with doctors, three with nurses, and one blood draw.

It was a tough week, a frustrating week, a week that even for us in this point in our lives is unusual.  Sure, we have more doctors’ appointments than the average family, but because it was school vacation week, we loaded up on the specialists so Wendy didn’t have to miss academic classes.  Add in a few problems and we got a few more appointments.  It was dismal.  It was awful for Wendy and was awful for me.

It could have been the worst, however, for my younger daughter, Penny.

Penny.  I got pregnant with Penny while we were waiting for a kidney transplant for Wendy.  We decided to name her Penelope after the wife of Odysseus.  In The Odyssey she is often called “Circumspect Penelope,” who is smart and shrewd, who has all of the skills of a politician, but who is known first and foremost for her patience.

We needed patience while waiting for the kidney.

There aren’t many worse times that I could have gotten pregnant.  I couldn’t handle some of Wendy’s medications because it was bad for the fetus.  I couldn’t go into the operating room when the kidney arrived because there were too many risks with anesthesia for a pregnant woman, and at the time I was in my second trimester.  We moved back to Vermont from Boston when I was in my 39th week; I gave birth three days later. Her arrival to our family was both joyful and grounding:  it served as a reminder that we couldn’t live in the past of Wendy’s medical history.   Suddenly there was another person who needed love and protection, patience and understanding.

Penny has never known a moment of her life without a sick sister.  To her it is the normal thing.  I remember when Penny was in kindergarten and she asked me when she was going to get her own kidney, when she was going to be a diabetic just like her sister whom she adores more than anyone in the world.  It was the same kind of questioning that I got when she asked when she could play soccer like her sister, run in triathlons like her sister or get her ears pierced like her sister.  The medical issues were just part of the deal.

When we go to the doctor now, Penny packs herself a bag of things that keep her occupied.  She’s reading chapter books now, so she brings one, along with an intricate coloring book and some markers.  Sometimes she will bring shopkins or stuffed animals to play with. She is exceptionally good at keeping busy.  She almost never complains she’s bored. But sometimes she wants to be on the exam table with her sister.  She often requests a snack after an appointment.  At our last appointment, she wrote me a note that said, “Mom, I love you.  And I’m Hungry.”

When I was a kid, we had dinner together as a family every night and 95% of the time my parents had cooked it.  I thought that’s what every family, everywhere did, and was shocked when I found out differently.  Sometimes I wonder if Penny will think that every family, everywhere knows exactly where to park at Massachusetts General Hospital, doesn’t need a map, knows the back door entries, walks to the science museum after a doctor’s appointment, goes to the park or picks the perfect place for lunch after an ultrasound.  That every family is comfortable in this environment, because we are.

I also wonder, and worry, whether Penny will look back on this time in all of the doctors’ offices and think it was all a colossal  waste of time.  For now, she’s too young to stay home alone, and we try to do fun things around the visits so they aren’t too onerous.  She is also too young for any support group for siblings of sick kids, and I wonder if she’ll want to go to them once she can.

The unavoidable truth is that a child’s illness doesn’t just affect the child who is sick, it affects the whole family, siblings included.

That’s one of the reasons that we moved back to the Boston metro area from Vermont.  When Penny was three years old and Wendy was post-transplant for three years, we weighed the pros and cons of moving to a town closer to Boston.  Yes, we were certainly moving to have Wendy closer to her medical home, but we were also moving so that there would be a community of support for Penny, so that we wouldn’t be four hours away from her when Wendy was in the hospital, or she wouldn’t be four hours away from her school, friends, and activities once she got older.  We were reassured that we had found the right community when numerous families offered to take Penny while Wendy went into the hospital a few months after we arrived in our new town.

Luckily, Penny is the kind of kid that just blends in with families, and even more luckily, we haven’t needed to rely on the good grace of our friends because Wendy’s been overall healthy.

One of the best pieces of advice I was ever given was, “As a mother, you are only as happy as your least happy child.”  We have to pay attention to the needs of both kids, as much as we can, and help them to be good, strong, empathetic, resilient adults, whether they have special health care needs or not.