Tag: parents

Storms Make Trees Take Deeper Roots

Posted in UncategorizedTagged , , , , , , 1 Comment

Fitting into the working world as a mom of a chronically ill kid can be challenging.  I have found that for the most part, part-time work has been the best fit.  It’s flexible, it’s convenient, and it allows me to still take Wendy to doctor’s appointments, or call insurance companies, or figure out prescriptions and durable medical devices, or whatever.  Being the mom of a chronically ill kid can be a lot of work.

But I still want to be a professional, and I have trained to be a historian, or a teacher of history.  For the past ten years I have worked part time as a history adjunct in both Vermont and Massachusetts.  Recently, the college where I worked shuttered its doors.  It was devastating to all involved:  students, professors, and administrators.  We had all been cut adrift with not so much warning; we were told in April that the college would close in May.

So I needed to take stock of what I had done for the past ten years.  I had cared for my very ill child, I had advocated for her in a hospital setting. I had monitored and adjusted her 24 different medications, her three different insurances, and her doctors in three different states.  I had spoken at Grand Rounds, had spoken to medical students and new residents.  I had helped to revise documents released to the public about medical conditions.  I had created a welcome video for children when they arrived in the Emergency Department, sick and scared.  I had lobbied politicians and representatives for medical insurance rights.

Here’s the thing:  no one cared.  No one in the medical world would give me a job based on these qualifications.  They thanked me for my service and after the initial interview I never heard from them again.

I also applied to many different part-time teaching jobs.  I had lots of experience, I’ve taught lots of different subjects, from world history to American history, to Native American, African American and women in American history.  I’ve taught courses on totalitarianism and brought students to concentration camps.  But when I was asked why I worked part-time, my response of taking care of my daughter while working was seen as a liability.  They thanked me for my services and after the initial interview I never heard from them again.

Let’s be clear:  I’ve worked hard for the last ten years.  I’ve had to do things to and with my child that I would not wish on my worst enemies.  I have been brought to the edge of sanity with grief and worry and sleep deprivation.  But as I suspected long ago, the rest of the world does not value that kind of commitment, or organization, or dedication to taking care of my child.  Most people see me as a liability, though I’ve never missed work, I’ve always managed.

I’m an excellent teacher.  I’m an excellent caregiver.  I can be both.  I have been both.

This time has really damaged my self-esteem, because even though being a parent of a chronically ill kid is hard, to be honest, I really thought I had my shit together.  The college closing was like a slap in the face,  the world I had created was shattered like a false mirror, revealing what the rest of the world really knew, really thought of parents of chronically ill kids.

I wondered if keeping this blog, after my experiences this spring and summer, was just an exercise in vanity.  Maybe, I thought, I should stop writing.  But I realized other people, other parents, must feel the way that I do, working the hardest job in the world, and feeling undervalued by society.  So I’ll keep writing, at least for now, or until no one reads the blog posts anymore.

As a postscript, I have found a job, and I really love it.  The problem is that it’s full time, and I’ve been struggling mightily with the other aspects of care.  My chronically ill daughter and her doctors’ appointments and insurances.  My other daughter who is well but seeing less of her mom.  My husband who is valiantly picking up my slack in those departments and whom I couldn’t do any of this without.  I’m sure that these will be other blog posts in the future.

Moms and Dads of chronically ill kids, know that I value you and I know how hard you are working.  I know from experience.  The world may not value the struggle but other parents recognize the hard work it takes to resemble normal.

Keep going.  Storms make trees take deeper roots.

Happy Father’s Day to all the Kickass Dads Out there.

Posted in Family, UncategorizedTagged , , , , 1 Comment

Father’s Day is a hard day for my husband, because it was on Father’s Day 2007 that Wendy first announced she had a stomach ache.  That stomach ache turned into a life threatening bacterial infection, that turned into cascading organ failure, sepsis, and an eventual kidney transplant, abdominal surgeries, and a variety of secondary diagnoses.

I can understand why he doesn’t like the holiday. But I wish he would get over it because he’s a kickass dad and we need to celebrate that.

When Wendy was in the hospital, over 200 nights as an inpatient, he spent almost every single night with her.  They had their own routine: They would walk me down to the entryway, come back, set up the beds, brush teeth, get in pajamas, and then read Harry Potter.  While in the hospital they read almost the entire series.  After hours they would sometimes go for walk in the hospital, to the PICU to see the fish tank, or to look in the gift shop window.  When I arrived in the morning with coffee, we would both stay to listen to rounds and then he would head back to our hotel room to take a nap, because honestly how much sleep did he honestly get on a tiny bed in a hospital room?

When Wendy was released, and the family still had to live in Boston to be close to the hospital, my husband looked for an apartment that we could afford and where I would be comfortable being there alone with her.  He found one that not only fit those requirements, but also allowed for a free shuttle back and forth to the hospital. Then he went back to work in Vermont, working three twelve hour days at work, and driving down to Boston for the long weekend, and to relieve me a little bit of the child care.  When he was offered a new job, even though he was worried that he couldn’t commit to it entirely because of Wendy’s health and said so, his boss said, “So you’ll be at 80 percent the first year, and you’ll make it up in the  coming years, I can live with that.”  And so, Michael took a new job as we waited for a new kidney.

When I found out I was pregnant with our second child, also while waiting for the new kidney, I was terrified of telling my husband, because I was scared that it was the one thing that would put him over the edge.  But he was so excited, so happy, that I couldn’t be that worried.  Ok, I was still worried.  New job, new kidney, new baby, in that order.

Now we’re in the present, with two girls who are relatively healthy and stable, and he goes to every sporting event, every recital, every activity.  He arranges the family schedule and sends me and Wendy our invites.  He is his happiest when he is watching his girls perform, especially sporting events, but also for music recitals and art shows.  Everything else comes second to those things.

I am lucky to have a kind and caring partner, who loves being a dad as much as this man does.  Our road has been bumpy with health problems and moves and changes of jobs, but he remains constant.  And so, I really really want to celebrate him on Father’s Day, even if he doesn’t want to be reminded of it, because it’s what started all the trouble, but in its own way, it also started all the grace and greatness of this man.

Happy Father’s Day to all the kickass dads, especially those who are fathers of chronically ill kids, or those who carry an extra burden as a single dad. The world doesn’t give you enough credit, but I certainly do.

Family Centered Care is a Partnership

Posted in Advocacy, communication, empowerment, Family, health, UncategorizedTagged , , , , , Leave a comment

When you take your child to the doctor, or to the hospital, how much do you know about them?  How much do you influence them?  How much influence do you have over the nurses and the front desk staff, the phlebotomist or the technician?  Have you helped create the design of the location, or the layout of the room?  Have you influenced the way the providers interact with you?

How much influence do you want to have?

When Wendy was first sick, many years ago, we had no experience with doctors or hospitals.  We walked into a brand new situation, filled with well meaning and empathetic providers and a brand new Pediatric Intensive Care Unit.  But the unit was so new that no one knew where anything was, and I remember watching doctors rifle through drawers when Wendy was having a hard time breathing in order to get the right equipment to intubate her (put a breathing tube down her throat.)  I remember when she was breathing on her own again and a resident came in with a weird breathing apparatus that they wanted us to use so that Wendy’s lungs could get stronger, and then after the resident leaving, the nurse whispering that she would get us a bottle of bubbles instead.

I remember in this brand new PICU facility having the problem that Wendy wanted to pee on her own (at the age of 3) and there not being a toilet for her.  And I remember in this nice new facility that the television where we were watching the football game caught on fire.

All of these things were totally normal, understandable, but also preventable things. (Well, maybe not the Television Fire.) If a parent had been around to help with the planning of the spaces, to talk with the residents, to be a part of the process, then maybe some of these snafus wouldn’t have happened.

This is the idea behind family centered care.  The idea that as doctors, and nurses and other staffers, you’re not just treating the illness, you’re treating the person.  And with the case of little kids, you’re not just treating the person, you’re treating the entire family.  Lots of changes have been made since the day we walked into Massachusetts General Hospital almost eleven years ago.  Since our first day, the hospital has instituted bedside rounding, where the doctors go into the room to talk to the patient and the families to make a plan for the day, to see if the family has any questions, and to make things as clear as possible.  The nurses call once you’re discharged to see if you have any additional questions, or might have forgotten something, and to help you set up follow up appointments with your providers.  And you have the opportunity to rate your hospital stay, to mention what has worked and what hasn’t worked.

These are great improvements, real changes to the quality of care and the way parents and patients feel a part of the team.  These have been life changing improvements.

But whet if we could do more?

What if family centered care included the systemic planning of the care to begin with? What if families were asked to meet with providers before care ever took place to make the care itself better, seamless care?

I’ve been working toward this goal for a long time, as a member of the Family Advisory Council at Massachusetts General Hospital for Children.  First, I should tell you about the Family Advisory Council.  The FAC is made up of parents, doctors, nurses, social workers, child life specialists, and administrators.  Its goal is to foster better communication between patients, parents and families, and to make the hospital experience better all around.

One of the things that we do is work on projects that we feel are important, like a pediatric wheelchair pilot program.  The hospital didn’t have pediatric wheel chairs, can you believe it? So a group of concerned parents got together with administrators, went through all of the wheelchairs out there, and with the help of an occupational and physical therapist, chose the best one that would serve the needs of the most kids.  The hospital ordered a bunch and the results have been overwhelmingly positive.

Here are some other things that the Family Advisory Council does:

  •  Meet with new residents the very first day of their residency and talk to them about what it’s like to be parents of chronically ill kids and the importance of communication.
  • Meet with fellows who have been through residency and are now seeing patients in clinic and let them ask us questions about challenging interactions with patients and parents.
  • Host an annual Grand Rounds that usually surrounds communication between patients, parents, and providers.
  • Review public health documents before they go out to the public, to make sure that they make sense, that they have  met their goal of communication.
  • Review plans for new spaces to see if there’s anything that might have been missed (more electrical outlets or hooks for coats for example.)
  • Facilitate workshops on the difference between being “courteous” and “helpful” for front desk staff, because it’s possible to be very polite but not the least bit helpful at all.
  • Interview key new staff members who will interact with families, like nurse managers, etc.
  • Sit on standing committees in the hospital including Ethics, Quality & Safety, Inpatient Satisfaction, etc.

The idea is that if parents are a part of multiple systemic areas of the hospital, that the whole experience, for every patient and family, is better, because parents have been a part of the process.

This has been an evolution, each step was challenging.  Just a few years ago I asked if I could be a part of interviewing for a new position and was resoundingly told no.  Change has also been over a long period of time.  I’ve been the parent of a chronically ill child for eleven years, and all of this work is voluntary, and I have a job on top of that.  Other parents on the FAC have similar stories.  You have to have the will and the drive to make the hospital a better place and you have to find champions within the hospital who are willing to see the change as innovation.  Sometimes, that means being abrasive or sitting through discomfort.  A lot of change relies on trust, and trust needs to be built both on the personal level and on the institutional level.  It’s a partnership.

I’ve put this list here not because I want to trumpet our horn, but because these are concrete examples on how your hospital can move forward toward more patient and family centered care. I learned of a lot of this though an organization called The Institute for Patient and Family Centered Care. They are a non-profit organization that helps hospitals really self-evaluate where they are on the care spectrum and how they can move forward.  They’re having an international conference this summer in Baltimore Maryland.  I’ll be there.  If you come, please come by the poster session and say hi.

In a world where health care is already scary, its really great to minimize problems.  Having patients and parents be a part of the planning for systemic care can help to minimize those problems, but because this hasn’t often been done in the past, it’s often met with resistance.   Work through the resistance.  Sit with the discomfort.  Move forward together with trust.  Become a partnership.

 

 

 

Please Ask Me About My Bikini

Posted in empowerment, Family, UncategorizedTagged , , , , , , 2 Comments

This summer, I will be wearing a bikini.  Not because I lost a lot of weight.

I haven’t.

Not because I have a burning desire to wear a bikini again.

I don’t.

The reason is because I have two daughters, and I want to show them that bikinis are ok, no matter who wears them.  Short, tall, skinny, fat, no matter the skin tone or the cellulite.

Let me tell you how hard this is for me.  I haven’t worn a bikini since I was in high school.  I’m not a small woman.  I don’t especially like to be looked at, especially when I’m in a bathing suit.   I couldn’t find a single picture of myself in a bathing suit, even though I lived across the street from the ocean for all of my childhood and went to the beach almost every single day.

Like most women,  I am very conscious of my weight, and am a product of a lifetime assault by the media about what my body should be.  I was on my first diet when I was in the third grade.  I read all those teen magazines trying to determine my shape and size.  I’m a pear, by the way.  I went through the low fat phase, I’ve joined Weight Watchers and LA Weight Loss.  Until this last house purchase, I didn’t own a full length mirror because I never especially liked what I saw, so I chose not to look.  Like our President who gives women a number, I graded myself with letters.  I was an A-B-C:  A intellect, B face, C body.

My parents have also always been on a perpetual diet, trying to lose weight for the next event:  reunions or cruises or the next beach season. My mother went through the slim fast phase, the cabbage soup diet, the grapefruit diet, the magical drops diet.  You name it.  They also were especially helpful monitoring my diet as a kid, limiting my portions, especially of sweets.

Since I’ve had daughters, I have tried mightily to not transfer my weight issues to my girls.  Our goal as a family is to eat healthy foods, make good choices, and stay active.  I’ve been in road races and triathlons.  I swim at least once a week.  The girls are active in team sports and individual competitions.  We don’t have women’s magazine in the house.  We don’t even have a scale in the house because I didn’t want the girls to see me worry about my weight.

So it came as a surprise to me when my daughter, Wendy, didn’t want to wear a bikini.  She’s thirteen, very active, and pretty self assured.  She also swims competitively.  The thing is, that a bikini would be so much easier for her because she has two medical devices on her body because of her diabetes:  an insulin pump called an OmniPod and a continuous glucose monitor.  A one piece bathingsuit is harder to get on and off and has a much better chance of knocking off the devices, causing lots of trouble (our insurance only covers so many applications per month).

Because she’s thirteen, I thought maybe it was a body image thing, as in, she’s got all these new curves now, so maybe she’s not exactly sure what to do about them.  So I talked to her about it, saying I really wanted her to try a bikini, that I’m sure we could find one she was comfortable in.

She replied no, over and over again.  It turns out that she doesn’t want people to see her scars.

Wendy has a constellation of scars on her abdomen.   The right hand side is from some intestinal surgeries.  The left hand side is from her kidney transplant, and the star shaped scar on the top is from a peritoneal dialysis catheter.  The truth is, you don’t really notice them, at least I don’t.  They’re not ugly or red or jagged.  When she’s examined by surgical residents at the hospital, they look at them in wonder, like they’re kids looking at the window of a candy store.  Those scars, to me, show me that she is a warrior, and they’re something to be proud of.

But she was afraid that people would see them and ask her about them, and she would be forced to give her whole medical history at the pool or the beach.  I get it:  that’s a lot for a thirteen year old.

So we made a deal.  If she was willing to try on some bikinis, and found one she liked, that I would wear a bikini too.  I told her, “Don’t worry kid, If I’m wearing a bikini next to you, nobody is going to be looking at your scars.”

Well guess what? She didn’t just find one bikini she liked, she found two.

So…I’m not going to lie…..I panicked a little.

I am ashamed to admit that my first instinct was to go on some radical diet, but what exactly would that showcase to my daughters?  That only perfect bodies wear bikinis?  Wrong.

I told some of my best friends, who had a myriad of reactions. Some sent me suggestions that were over the top, ridiculous.  Star Wars themed, gold mesh, or string bikinis that  were smaller than a tissue. I wouldn’t be able to blow my nose on a triangle that small.  Some friends asked me if I could take it back, go back on my word, or wear a tankini.  That  would reduce Wendy’s trust in me, so I couldn’t do that.  Some friends shared their own insecurities or their negative body image.  Some friends applauded me.

Buying a bikini wasn’t the easiest thing in the world, but I found a lovely size 12 black bikini with white polka dots.  I bought a lovely cover up to go with it.  I’ve got a hat.

One thing is certain:  I’m going to need a lot more sunblock.

I’m not going to say that I’m going to love every minute  of wearing this bikini in public.  But I am going to “fake it until I make it” with confidence.  That is the very least I can do for my daughters.

I want them to know that their bodies are beautiful and powerful and theirs alone to love.

So this summer, if you see me, and I’m in my bikini, please ask me about it.

Giving Yourself Time

Posted in Resilience, UncategorizedTagged , , , Leave a comment

Caring for the Caregiver, Part One.

No one ever says “I want to be the parent of a chronically ill kid.”  No one.  Ever.  Yet, here we are, extra worry, extra stress, sometimes extra pounds due to poor eating choices.  We move forward because we have to, there is no one else who is going to carry this burden for us, though we cherish our friends all the more deeply because they do lighten our loads in more ways than we thought possible.

So you take care of your sick kid, and you take care of your family, and you talk to doctors and pharmacists and insurance companies.  You take care of your house, animals, house plants if you have them.  But do you take care of yourself?  Have you taken steps to make sure that you are as healthy as you can be?

I know the answer:  probably not.

Because we always put ourselves last.

But that’s not the right thing to do, for a number of reasons.  First of all, you are showing your kids that it’s ok to not take care of your body.  In this world, that is not what we want to be showing our children, we want to show them that their bodies are super important and will carry them through the rest of their lives.  When my daughters get their new teeth in, I say to them, “Take care of that tooth, it has to last ninety-five more years,” and they laugh at me, but I’m being serious.  This is the only body they get.  Yours is the only body you get.  You have to show them that it’s sacred.

Next reason:  you can’t be the best person you can be unless you take care of yourself.  You will eventually collapse.  It’s true, and you know it.  We all want to think that it won’t happen to us, but we all know, secretly, that it will.  But we can’t create more hours in the day, so what exactly do we do?

When I was a stressed out college student, I went to the counseling center, and the counselor there gave me a week’s calendar.  It was broken up by hour.  Twenty-four blocks for each day.  Imagine.  Then he had me block off eight hours for sleep a night and three hours for eating.  That was eleven hours, and it still gave me thirteen.  After then blocking out the time for each class, and time for studying for each class, I was amazed to see how much time I had left.  I am a visual learner, so this helped me actually see my days.

This is a great excercise, I highly recommend doing it.  (Make sure you give yourself the 8 hours of sleep and three hours to eat!)

https://www.template.net/business/schedule-templates/24-hour-schedule/

Ok, now you can see your day.  What are you going to do for you?  Small steps yield big results. I would first recommend daily meditation.

You read that right:  daily meditation.

Here’s what you need to do.  Find a spot, the same spot every day.  Sit down.  Clear your mind, breathe, and just be.  I know, I know, you think that this is impossible, that you have too many things running in your brain to shut down, and I can tell you, it takes practice, it takes discipline.

I sit at the side of my bed, on the floor cross legged.  I concentrate on my breath, four counts in, four counts out.  I ground myself with a mantra.  Everyone’s mantra is different.  It’s the thing that you can say that tells you that this is your moment.  My mantra is two sentences.  I say them, and then I let my thoughts go.  And I sit in breathing stillness, for about ten minutes.

I didn’t start with ten minutes.  I started with two.  I would set a timer.  And then I worked out to three, then four, up to ten.  My girls know that this is an important time for me, because I’ve told them so. Actually I told them unless they’re bleeding or on fire not to interrupt me during my ten minutes.

Here’s what happens.  My breathing slows.  My mind sometimes thinks of things, but I let them go.  My body tells me what is hurting, so I often do a few stretches after the meditation.  (I actually call this my stretching and meditation time.) Sometimes my intuition tells me to check in on certain people during the day (It’s amazing what your subconscious picks up and you don’t realize it.  Which kid is feeling left out, who is acting stressed, etc.)  Then I end with thanking God (or the Universe if that’s what you prefer) for all of my blessings, sometimes naming them, sometimes not.  Then I take a deep breath in, breathe out, stand up, and start my day.

So basically, I take deep breaths, I listen to my body and my intuition, and I express gratitude.

Not so hard, right?

I try to do this every day, but in reality I might miss once or twice a week. In those days I notice that I’m more scattered with my thoughts, I might get flustered or angry easier.  But the good news is that the more you do it, the better you feel.  And though I do it first thing in the morning, you can do it anytime.  I have been known to meditate another time in a day if I know my evening will be stressful, it’s not often, but I know I can go back to that space and give myself a few moments to collect myself.

This may seem too New Age for you, and I get that.  But taking a few moments every day to check in with yourself can only help you.  If you start, let me know a few months down the road how you’re doing.

Time management and giving yourself time.  Imagine how much better you will feel.  Good luck.

Impatient, Empowered

Posted in Advocacy, communication, Compassion, empowerment, UncategorizedTagged , , , , , , , 2 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

Support For the Holidays

Posted in Advocacy, Compassion, Family, UncategorizedTagged , , , , , , 1 Comment

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

nicu-superman_1477867155679_6674201_ver1-0

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

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

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

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

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

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

For Fourth of July we saw the fireworks.

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

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

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

For New Years, we saw the fireworks.

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

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

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

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

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

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

 

 

 

Understanding, But Not Sharing, Despair

Posted in communication, Compassion, coping, Family, Resilience, transplant, UncategorizedTagged , , , , , , , , , , , 1 Comment

I want to get this blog post just right, and yet I’m afraid that I will fail miserably.

But I’m going to try.

I read today about the Short family, a family from Pennsylvania who died of an apparent murder-suicide.  They had a chronically ill kid, a child who had received a heart transplant.  They had been featured in their local newspaper when their daughter Willow received the heart. The story was hopeful, it was upbeat.  There was a future thanks to a generous donor.  People like to think of it as a happy ending, but in reality organ donation is only a beginning.

A year later, the same family was featured in a New York Times article, detailing how hard it is to get the anti-rejection drugs compounded and filled, where it shows a picture of the mom dosing up the medicines, which by the way are the exact same medicines my daughter takes.  We have shared the same terror of worrying that you are going to run out of the medication that is keeping your daughter alive because of some stupid rule made by either the pharmacy or your insurance company.

In fact, up to this point, I know exactly how they feel.  Scared, hopeful, struggling.  There’s not a lot of place in this world for a sick kid.  I’ve said that for so many years now I feel like a broken record.  Not a lot of place, so parents of these kids keep fighting.  Fighting for prescriptions, fighting for 504s or IEPs in school.  Fighting for doctors’ appointments, fighting to be heard by doctors and nurses, by other hospital staff, by pharmacies and insurance companies.  Giving the thumbnail version of your child’s illness to every new person on the phone, every health care worker you meet, every time.

It’s exhausting.

And yet, none of us know what we sign up for as parents, and we have to move forward.  We are not just caregivers, but nurses, social workers, dieticians, pharmacists, and medical managers.  No one is going to do it for us, and no user manuals are included.

There are other kids in the family, kids who might not get as much attention as they deserve because the parents have to deal with the sick kid, the emergency, the crisis.  They are unwitting victims of the tragedy.  That adds pressure, too, the fact that you know you’re not able to be the kind of parent you want to be to all of your kids because there simply aren’t enough hours in the day.

There are stresses with work, normal stresses, but nothing more stressful than the idea of losing your job, because you need those health insurance benefits more than anything else.  So you make fewer waves even if something might be wrong because you can’t afford to be unemployed.  There are sacrifices you make, as little as sleep or as large as a professional life, in service to the illness and the medical needs of the chronically ill child.

All of these problems contribute to difficulty in a marriage.  You promise to love, honor and cherish when things are at their brightest and the future has all sunshine and rainbows, but stress, bills, worry, and problems are unrelenting.  You are constantly afraid that the delicate balance you’ve constructed will get tipped again with an emergency. You are waiting for the other shoe to drop.

Damn, it’s really hard.

The mom in this tragedy blogged about her struggles with PTSD, from dealing with her daughter’s medical issues.  She talked about her survivor’s guilt, knowing that another child died while her child lived.  I can personally attest to that guilt, and have blogged about it before in my piece, Dear Mom of My Daughter’s Kidney Donor.  It is a unique and exquisite combination of gratitude and guilt that parents of kids who have received organs from deceased donors share.

Now there are five dead bodies, six if you include the dog, in a murder-suicide. A family that seemed very public about their struggles, struggles that I share as the parent of a chronically ill kid.  And I feel so many emotions connected to it.  Anger at the futility of it, and anger for the donor family too.  Sadness, a bottomless sadness for the family.  Horrible unrelenting understanding at the dark side of the situation.   Gratitude for the love and support from my family and friends, because through all of the many years now I have never, ever felt alone.

Because the truth is, that while there’s not a lot place in this world for sick kids, there’s not much place in this world for their parents either.  It’s only through the personal connections you have and make that carry you through the hard times.  It’s knowing you’re never alone, that there’s always someone there to listen, laugh with, or help you problem solve.  It’s combating the feeling of isolation with the knowledge that there’s always someone there for you, and you are there in return for them.

Hug the ones you love today and thank them.

My deepest sympathies and condolences to those who knew and loved the Short family.

The National Suicide Prevention 24 Hour Hotline: 1-800-273-8255

 

Ripple Effect

Posted in communication, coping, Resilience, transplant, UncategorizedTagged , , , , , , , 2 Comments

Have you ever heard a story that just stays with you?  Something that hits at your core, that makes you think about it, and re-think about it, and connect to it, and share it.  Maybe you have stayed in the car a little longer in a driveway because you are listening to “Story Corps” on NPR.  Maybe it’s something you’ve read on facebook.  Sometimes, you don’t realize how much a person’s story means to you, in your own journey to understanding and recovery from a diagnosis or the diagnosis of your child.

This recently was brought to my attention when a woman asked to be my facebook friend.  I was pretty sure I didn’t know her, had never met her, but there were a lot of people I had met at the American Transplant Games, and many of the mutual friends she and I had in facebook were those same people I had only recently met in Cleveland.  So I decided to accept her friend request and see who she really was.

What I didn’t know is that I had been reading her blog posts for over seven years.

Her daughter, Lacey, had gone through two organ transplants, both a heart and a kidney.  The heart transplant happened when Lacey was a baby, and after many years of immuno suppression (which isn’t great on the kidneys) her kidneys gave out too.  Lacey’s brother donated his kidney to her.  I had read all about it on their CarePage.

CarePages are a medical blog where you can update your loved ones about your condition. There are other ones like it, the most popular being CaringBridge.   We had been blogging about Wendy’s illness from the first week that we were at Massachusetts General Hospital.  It was helpful because it kept everyone updated without having to tell the same story over and over again.  It also was therapeutic for me to take stock of the day in the evening and determine what had gone well and what hadn’t.  In a hospital where certain events happens quickly between long periods of waiting, it was helpful to think through every day to process it all and write about it for our loved ones.   It was also bolstering because our loved ones could write messages of support for us and for Wendy at the bottom of every post, carrying us through to the next day.  There was an option to keep it private, to have people ask to join the group, and initially that’s what we did, kept it closed for only family and friends.

At the point where we were told that Wendy was going to need a kidney transplant, we had never met anyone who had gone through organ transplantation before, so I searched in Carepages and found Lacey Wood’s site.  It’s called LuckyLacey, and it told not only all about her journey as a heart transplant patient, but also as a kidney transplant patient.  It told all about her competitions in the American Transplant Games and the World Transplant Games.  It talked about her college that has a special section for kids with transplants who are going through various stages of transplantation so that they can get the best care they need while still going to college.  I learned so much from this site, that there was a warm, caring transplant community that connected each other to the best care and resources, that there was a celebration of life and living.

At a time when I was very scared, this blog especially gave me hope.

It also showed me what was possible for Wendy.  We never would have known about the American Transplant Games, or the Transplant Winter Camp, or the Chronic Illness Initiative at DePaul University.  We learned though Lacey’s journey and through the generosity of her words in her Carepages blog.

Her blog made me re-think our blog, WildWonderfulWendy.  What if our blog about HUS and kidney transplantation helped someone else the way that LuckyLacey helped us?  Michael and I talked about it and decided to make Wendy’s blog public.  

And now, years later, I’ve started this blog.  I outlined why I decided to write it in the first place in my first post, Brave Fragile Warriors.  I realized that being the parent of a chronically ill kid can be incredibly isolating.  You have so many feelings and not a lot of people who can relate to you.

We never know what impact we have on another’s life.  We don’t know what our ripple effect is.

When Lacey’s  mother contacted me to be my friend on facebook and I realized who she was, I sat down and wrote to her to let her know how much Lacey’s blog helped me through the fear and isolation of being the mom of a kidney transplant kid.  Otherwise she never would have known her own ripple effect.

It’s so important to share these moments, so other parents know they are not alone.  It’s equally important to share with others how much their stories touch our hearts, so that they may continue to write.  We are many stories, but the Same feelings of helplessness, fear and love.

Thanks for reading my stories. Please share your own, in the comments below or with your own blog and then let me know so I can read them.

Forward together is better than forward alone.

What If I Don’t Know the Answer?

Posted in Advocacy, communication, Compassion, Education, Family, UncategorizedTagged , , , , , , , , , , , , , , , 2 Comments

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.