My Kid’s Not Normal

Wendy has a concussion, and I remarked to a few friends that it was nice to have normal kid problems.

You see, after many years of having Wendy surf the medical system with her kidney transplant, and not-quite-type-one diabetes (her pancreas works at 15%, so it needs insulin but it’s not officially type one), her high blood pressure, her quirky dietary restrictions, and her eye-tracking/learning difficulty (it turns out its hard to read when your eyes don’t track at the same rate–who knew?) It was nice to settle into a diagnosis that lots of kids get, a sports-related injury.

A normal kid problem.

Wendy is the striker on her soccer team, and over the course of a weekend at a tournament, she played a total of 5 games, where she scored 9 points.  In the third game on the first day, she received a cheap shot from an opposing player, who blindsided her from the right side, causing her to go flying and land on the ground, where she hit her head on the left side.  The player got a yellow card for the action.  Wendy was pulled out and tested for a concussion, but she seemed to be ok, so we let her play the next day.

The next day she was playing in her second game and she had already scored on this goalie.  She was barreling down the field and was about to shoot, when the goalie, instead of stepping back to take the shot, stepped forward to engage Wendy, and Wendy went flying over the leg of the goalie and landed on her right side.

That’s when she was definitely not herself, and after a trip to the Emergency Department, it was confirmed that she had a concussion.

A normal kid problem, Except, of course, that it’s not normal.

Wendy’s concussion seems to be taking a bit longer than most concussions for her to get closer to baseline, it’s a slower recovery.  There are lots of possibilities for this, like maybe instead of a mild-moderate concussion, it’s more like a moderate concussion, or maybe it’s because she had seizures in the acute stages of her illness as a child, or maybe it’s because her anti-rejection drugs are neuro-toxic (they’re tough on the brain.)

The truth is, I could wonder these things all the live long day, and it’s not going to get me anywhere, because the recovery protocol is the same:  rest, no screens, moderate brain activity until she is symptom free.  So now, two weeks later, she’s started half days at school and then coming home and sleeping all afternoon.  We wait, and she sleeps, and she gets a little stronger every day.  But she’s such a vibrant kid, who is always in motion, always joking, always singing to herself, it’s tough to see her only be a part of her normal ebullient self.

As a parent, we are only as happy as our least happy kid, and my least happy kid is hurting right now.

She won’t be able to start sports until a few weeks after she’s symptom free, and she is far from symptom free. In the meantime, Michael has ordered her a snazzy “concussion headband” for her to wear next time she plays, where she will look a lot like an actor on the TRON movie set, and we’re looking into ways to get her trained to learn how to roll instead of land on her head.  Because there’s no way she’s going to stop playing soccer, it might be the thing she loves the most to do, and what all of her friends do, and as long as she is feeling good, we will keep her at it.

Because that’s what we do as her parents.  We support her through this crazy life, to live it the best way she can, the way that makes her happy.  And soccer makes her happy.  Even if it’s a little rough to watch her sometimes because I know all the things that could go wrong.  I still wait to see if she gets up after the hard hits and she often will give us the two thumbs up to tell us she is ok.

And we move forward.  Not normal, but that’s all right.  We move forward anyway.

 

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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!

 

 

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.

Flu Shot: Who Depends on You?

There’s been a lot of talk about the Flu shot lately, mostly because the nasal mist isn’t available this year so everyone needs to get a shot.

Lots of people don’t like shots.

We often make our kids do it, we even hold them still or hold them down so it will happen. This is especially true when our kids are medically fragile. Getting a flu shot is sort of a no brainer, it’s  an easy thing to do to protect our kids against something that could be life threatening.  I know with my daughter Wendy we’re always right near the front of the line to get the shot.

But when it comes to the conscious decision whether or not to get your own flu shot, a lot of us find a whole bunch of excuses.  It’s not convenient.  It’s a hassle.  I don’t like shots.  I get the flu from the flu shot.  I have heard them all.

I have had the flu exactly one time in my life.  When I got the flu in late April of the year 2000, I honestly thought I was dying.  Sweating through my sheets, unable to eat, feeling like a truck ran over me.  I was quite literally a hot mess.  There’s a old wives’ tale that says that a first year teacher will get every illness her students get, and that will build your immune system. At least in my case, that was the truth.

I have gotten a flu shot every year since.

However, Michael has missed his flu shot the last couple of years, for all of the reasons mentioned above.  It just got away from him.  These things happen.

Then he got the flu.  At the worst possible time.

If you’ve read my blog, you know that once a year I’ve taken a group of students to Eastern Europe to study the Holocaust.  I’ve blogged about my stress level in preparation for it in the post Confessions of the Alpha Parent.  It’s not that Michael can’t take care of the kids, he’s a wonderful capable parent who loves his daughters and is a responsible individual.

But then he got the flu, and his wife was 4,000 miles away.

He was  not the only one.  Penny got the flu too.  Only she had the flu shot, so her flu lasted about 24 hours.  Michael was knocked horizontal for about a week.  But he was very conscientious: he called the nephrologist, told her the story, who consulted with the Infectious Disease doctor and they put Wendy on prophylactic Tamiflu.    Because the fact is that if Wendy got the flu, it would likely earn her 72 hours in the hospital for monitoring.  We would like to avoid that if we could.

He also farmed Wendy out to friends.  She was gone for most of the day, every day, between school and after school activities.  She also stayed at friends’ homes and had dinner there, really only coming home to sleep.  Others called Michael daily to make sure he had the basics in the house:  milk for cereal, dinner for the kids, etc.   Thank God for a good community.

I had made a whole bunch of soups as part of my preparation to go to Europe, so the family could just heat them up and eat at the end of the day.  So, luckily, Michael and Penny had lots of Chicken Noodle Soup to eat!  And they both made sure they were hydrated.

Nonetheless, I felt terribly guilty about being so far away. I would call Michael over facetime and he would be in bed, looking terribly sick, trying to put a good face on because he didn’t want me to have to come home early, but clearly struggling.  His illness made him barely able to keep it together, but he did, with the help of our neighbors and friends.

I probably don’t have to tell you that he was the first one to get his flu shot this year.

Let me ask you this:  Who depends on you to be healthy and take care of them?  What would happen if you couldn’t do it, for maybe a week?  Isn’t it worth a short shot, a quick trip to the doctor or pharmacy, so that you don’t have to worry about it, or worry about spreading it to your child?

The answer should be obvious.

 

#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.