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!

 

 

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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.

#projectW

This is a story of determination and luck.  And maybe some magic.

Once upon a time there was a little girl who had a lot of medical problems and saw the inside of a hospital for  many, many days.

She got sick, then a little better, then a LOT sicker, then better, better, a little better, and then better still.  But she still went into the hospital from time to time, by way of the Emergency Department.  It’s just the way life was for this little girl, and it wasn’t fair, but it just was.  It was nobody’s fault.  She made the most of it, by making routines of walking her mommy to the door every night with her father, through the halls of the hospital, to the farthest building that was still connected, and then going to see the fish in the PICU, and coming back and reading Harry Potter until they fell asleep.

She learned how to flush her IV lines and when unsuspecting people would come in, she would squirt them with the flushes she kept in her bed.  Then she would laugh maniacally.

She and her parents would set up Christmas Lights at night, and then take them down during the day so they didn’t get yelled at.

She would ride on her IV pole when no one was looking.

She would have her toenails painted by her favorite nurse.

Sometimes she would sneak downstairs with her mom and get a hair cut, or go to the chapel, or go to the gift shop to get a prize.

That’s when she was feeling well, which wasn’t all the time, but she and her parents made the best of the times that they had when she was feeling better and in the hospital.

All together, she spent over two hundred days as an inpatient at Massachusetts General Hospital.

She didn’t really know it, but she was becoming AN EXPERT at being a hospital patient.  And she knew a lot more than other kids about it.

********

Her name is Wendy, and she’s my daughter.  While this was happening, she was between the ages of 3 and 5.  Now she’s twelve.

A few years ago a neighbor called us.  You see, both of her kids were in the hospital.  One was an expected surgery and one was an emergency appendectomy.  The mom called us a few times to ask questions about what to bring, what to do, what to expect.  Wendy and I answered her questions together.  We realized together that we knew a lot of things that average people don’t about hospitals and how to handle them.  We decided to write a story about our experiences.

The story was designed to help kids who were waiting in the Emergency Room, and were probably in pain, and likely nervous or scared.  If those kids asked their parents what to expect, a lot of the times, their parents didn’t know how to answer and were worried themselves.  Wendy and I thought that together we could help both the kids and their parents.  Once we were finished, we wondered what in the world should we do with it now?

We decided to give it to the hospital, and find a way to get it published.  We thought it would make a great coloring book.  Well, like many things in a hospital, it had to have a committee, so everyone could look at it.  So with the help of the chair of the Family Advisory Council, a committee was formed, with doctors and nurses, and social workers, and child life specialists, and a few other people.

They said they loved it….but could we change it?

So we did.  We made it more technical, explaining more and more things.  But we hated it because it didn’t feel like Wendy’s story anymore.

The committee hated it too.  So we started all over again, and this time made it more personal.  That felt better.  We had a good working draft and it was approved.  Yay!

Then….tragedy struck.  The Emergency Department decided that when it went through renovations that it was going to go paperless.  So no book.

What do we do now?.  Then I thought maybe we could get it animated.  But money was a problem, I didn’t have any to put toward a project, and so I looked into an internship at the hospital for a student of computer animation.  We made a job description, we found a mentor at the hospital, we filled out all the paperwork.

We got an intern!  Yay!

But, then tragedy struck again.  It was too much for the intern to handle, too big of a project.  He didn’t tell us until the internship was over that he basically had nothing to show for his time.

And I thought, this is it, this is the end, after two years.  How in the world am I going to tell Wendy?  I had run out of options, and I did something I rarely ever do.  I felt self-pity.  I was so unbelievably sad.  I wrote about it on facebook, saying just that.  I had run out of ideas and I was going to have to give up, something I hated.

LOTS of people responded with ideas.  Lots of people gave names of people who could help.  One friend asked for the transcript, so I sent it to him.  Then Stu said, “Would you mind coming in tomorrow to talk to my team about it?”

And I said Yes, thinking that I was going to have to pitch the story to this group of people in an architecture firm, so I planned what I was going to say and I went to the meeting.

That’s when something magical happened.

The had already decided!  They were going to animate it!

Yay!  Again!

And so we have been working on this project with them for almost six months.  Wendy has given her voice to the story, and she will be the narrator outside of the scenes. The Architecture firm, Payette, has been to the hospital to take pictures of the rooms. They have drawn a cartoon Wendy.  They have recorded her voice.  It should be mostly ready in a few weeks.  And I just can’t help but marvel at it, at all the kids it’s going to help.   It’s right now being called #projectW.   The idea now is going to look like this:

A child and his/her parent come to the emergency room.  They go through triage, and are sent to the pediatric portion of the ED, a separate place.  While they are waiting for treatment, they will be given an Ipad with the story that they can watch, which will be about 10 minutes long.  Wendy will tell them lots of what they can expect.  It will be her person who will reduce their anxiety.  It will be the pictures that Payette has drawn that will show them the way.

I just can’t wait the few more weeks until this is finished!!!!  Those of you who know me have been bored probably to tears hearing me talk about it, worry about it, work on it, or explain the many iterations.  I am sorry if that has happened.  But I promise that when it’s over, it will totally be worth it.  I just cannot wait!

Wendy is totally taking it in stride, like she becomes a cartoon character every day.  That’s just the way she is.

Like I said, determination, luck, and magic.

Photo:  the first working cartoon drafts of Wendy’s character.