Tag: medicine

Storms Make Trees Take Deeper Roots

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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.

Compassion is Sometimes Foreign

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

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

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

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

Busted.

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

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

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

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

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

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

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

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

This doctor.  This doctor is an immigrant.

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

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

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

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

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

No matter their country of birth.

 

 

Diabetic Misadventures In Italy

Posted in communication, coping, diabetes, Family, friendship, Resilience, UncategorizedTagged , , , , , , , , 2 Comments

I love coming back from vacation and telling my friends and family about it.  Ok, I don’t really love coming back from vacation, but I do love sleeping in my own bed, petting my kitty cats and seeing friends that I’ve missed.  This year was a very special trip to Italy and its large southern island of Sicily.  While there, we visited with family and friends, we returned to the site of our marriage fifteen years ago, and we saw amazing places along the way.

Upon our return to the States, I tell our friends and family about swimming in the Tyrrhenian Sea, about eating at the same restaurant we did on our wedding night.  I talk about the flavors of Gelato, beautiful candy and earth colors of them lined up along the freezer, and of choosing new flavors like jasmine or pistachio-chocolate or green fig.  I tell them about the massive Greek temple ruins that the girls clambered along, about the graceful Baroque churches, or about the bell-towers or domes we climbed to get the best view.  I might tell them about the harrowing drives along the Amalfi Coast, with narrow roads hugging the cliffs or navigating traffic in Sicily where the street signs and traffic lights are more like suggestions than laws to native Italian drivers.  Maybe I share stories of encounters with the locals, like the sausage man who threw rings of salami in the air to the kids and persuaded us to buy a link as long as my seven-year-old’s arm.  These are the stories I tell them.  These are the stories that they want to hear.amalfi coast

But vacations are not all wonderful moments, and when you have a child with special health care needs, you not only have to plan more, but you have to be ready to roll with the punches when they come along, and that’s all a part of the journey, but not a part anyone wants to hear about.

My twelve year old has multiple health problems, but one of them is that she is a type one diabetic, which means that she cannot produce her own insulin to digest carbohydrates.  We have to give her insulin with every meal based upon what she eats so that she will stay healthy.  This has to be given subcutaneously, or under the skin, in order for it to work.

The first moment of terror for me this vacation was when I realized, suddenly, that we had foolishly forgotten the extra insulin for my daughter at home.  We had enough for a week, but we would be away a few days longer than that.  Calls were made to our insurance company, and we discussed overnight shipping, ice packs, and reliable addresses.  This didn’t sound like a good option.  So I learned how to say in Italian, “My daughter is a diabetic, and I would like to buy some more insulin,” Normally, my Italian is limited to restaurant menus and directions to the WC, so this was a stretch. We were in a tiny hill town called Castel Gandolfo, some twenty miles south of Rome, it holds the summer palace of the pope and contains the dairy cows used to make his special milk.  It sits on the edge of an old volcanic crater that now has a lake.  Our apartment looked out over the lake and we could walk the whole circumference of the hill town in under a half hour.  We went to the first farmacia, the Italian word for pharmacy, with a green fluorescent cross outside its door, located in the shadow of the summer palace. The pharmacist understood what I was trying to say, but told me in Italian that he didn’t have what I needed, but not to worry, other farmacias would, I just needed to keep looking.  Ok, onto the next stop.castello gandolfo

This was the town of Amalfi, when fifteen years earlier my husband and I got married in the presence of a handful of close friends and family.  We had planned to have dinner at the same restaurant as we did on our wedding night, so we arrived early to the town, walked around and waited for the restaurant to open.  I spotted a farmacia tucked away in a little square.  Amalfi is a seaside community, with steep cliffs and rocky beaches, and I was standing in line at the farmacia with beach goers who had gotten too much sun or mothers that needed more formula for their babies.  But luck was with me, the woman at the farmacia produced what I needed:  a vial of Humulog.  I finally was able to relax knowing that we could take care of our daughter for the whole vacation, and get insulin as we needed it.

noto dome

Which was good, because we needed it again, in a more dire way.  My daughter wears an insulin pump, and we were in the small Baroque town of Noto in south east Sicily.  We were admiring the large cathedral in town that was showing off its new dome, because the old dome had collapsed in the 1990s and it had just been reconstructed.  The church was beautiful, clean, cream colored, with gorgeous statues along the walls and spacious pews making the whole church feel light and airy.  When we heard the high pitched alarm, we knew immediately what it was, Wendy’s insulin pump had malfunctioned, and needed to be replaced.  I sat in a corner of the church looking at a statue, getting out the medical supplies, and making a new “pod” of insulin so we could put it back on Wendy.  That involves disconnecting the old pump, filling a new one with a large syringe and a vial of insulin, making sure it works, then re-attaching it, and turning it back on.  I wondered if anyone was going to stop me with the large medical bag and beeping equipment, but no one did.    I filled the new pod with the last of the insulin, and then I handed it to Wendy to apply it in a bathroom with an alcohol pad.  Normally I would help her, but Italian bathrooms are notoriously tiny, so she did it herself.

We walked around the lovely town thinking we had dodged a bullet, climbing the bell tower and looking at the magnificent view, but when we found a local trattoria and ordered our dinner, we noticed that Wendy’s blood glucose was too high and gave her a bolus of insulin before dinner.  It didn’t work and she went higher, so we gave her another bolus, but that didn’t work either.  Something was wrong.

It turns out that Wendy didn’t apply the new pod well to her skin and it wasn’t working.  I had used the last of the insulin on the new pod, and we had more in the refrigerator back where we were staying, an hour away.  We were with another couple, a childhood friend of my husband and his family, and we had all visited the town together, had dinner together, and we had promised the four children gelato if they did well in the restaurant.

single gelato

The problem was that Wendy’s glucose was too high to go untreated and give her gelato too.  It would have sent her sugar up to dangerous levels.  But all of the other kids were expecting gelato, in fact, the town of Noto is supposed to have the best gelato in Sicily.  We couldn’t tell them just wait while we drive an hour to get more insulin, reapply a new pod, hope it works, and drive back another hour.  It was late, it was dark, and the kids expected the best gelato in Sicily.

An option could have been to let the other kids have gelato but not Wendy, but honestly, that would be a scarring memory for her, and while we want her to know that she is extraordinary, we want her to know that she is normal too, that she can do normal things, just like the other kids, and that includes sampling the best gelato in Sicily.  Imagine watching your friends all eating gelato and you can’t at the age of twelve.

Now tell me what you would do as a parent.

Farmacia Italy-746316

So we went to a farmacia in Noto.  I spoke my sentence in Italian.  The first one didn’t have a vial.  We walked to a second one, and thank God, they did.  We opened the box, opened the vial, pulled out an insulin syringe that I also happen to have with me in the medical bag, calculated what she would need to give her to both reduce her glucose and give her insulin for a gelato too, and we filled the syringe, gave her a shot in the arm right there in the farmacia, admist little boys with tummy aches and people who needed band-aids, handed the used syringe to the pharmacist to dispose of safely, and we left the store.

Then we walked to the restaurant with best gelato in the world and ate it.

And it was delicious.

After it was all over, after the alarm, the new pod in the church, the dinner, the two farmacias, the injection and finally the gelato, it had taken the better part of the afternoon and evening, just for one little girl, just for one diabetic, just for one vial of insulin, just for one cup of gelato.

And what was the best part of the day for me?  My twelve year old, when it was all over and we were walking back to the cars after the gelato, ready for the drive back to where we were staying, took me aside by the arm, kissed me on the cheek, and thanked me for going through all of that.  She understood the effort it took, and she was grateful. That’s what I’ll remember, not how hard it was, but how much she appreciated being able to be just one of the the other kids joking and laughing and eating the best gelato in Sicily.

This is not a story I’m necessarily going to share with my family and friends when I get home.  Why not?  It’s not exactly what they want to hear.  They want to hear about the swimming and the churches and the beautiful art, the stories of the crazy drivers and the marketplace hawkers.  They don’t want to hear about the hard stuff, the worry, the difficulties.  Vacations are supposed to be fun, right?

But to me, this isn’t just a vacation, it’s showing my daughter that her medical difficulties can be overcome, that problems can be sorted out, even in another country, even when we don’t speak the language.  That if she really wants something, we will find a way.  That she shouldn’t be held back by the difficulties, but should look at them as challenges to be worked through.  Yes, it’s a beautiful location to learn this lesson, and yes, we are lucky that she’s healthy enough to do the travelling in the first place.  But to me, the travelling is showing her that solutions are possible.

The rewards can be sweet.

Siblings of Sick Kids

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

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

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

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

We needed patience while waiting for the kidney.

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

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

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

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

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

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

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

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

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

 

 

 

 

Dear Doctor S—-

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Dear Doctor S—-

I want to thank you.  Really.   Even though you gave us bad news, I want to thank you for your approach, courtesy, and helpfulness.

Truthfully, we don’t know you well.  Wendy goes to see you once a year, to get new glasses.  We were just there a few months ago.  But in the last month or so, she was having a hard time seeing again, and I thought maybe it was growth or puberty or whatever, and I took her back to you.  I had Penny in tow as it was school vacation week.

You remembered all of us and asked us each questions about work, school, sports, and our town.  You spoke about people we knew in common.  You were ok with Penny playing on the floor of the room while you conducted your exam.  You don’t know how much I appreciated that, most of the time doctors find the extra child to be tiresome at best and a nuisance at worst.  You totally went with the flow of our chaotic life.

You examined Wendy and realized that it wasn’t really her vision that was off, that her prescription didn’t need to change that much, so you looked for more problems.  It turned out that Wendy was seeing double.  You examined her and you asked her good questions.  She had a hard time explaining some things, and you encouraged her by telling her that you know these things are hard to explain, but she was doing a good job and she should keep going and he would ask questions for clarification.  Doctors don’t do this often enough, not only did you engage Wendy, but you encouraged her, and when she didn’t have the right words, you asked thoughtful, non-threatening questions to help her.  Then you let her and Penny go out to pick glasses.

And this is a small thing, but I need to mention it.  Your staff was totally fine with both girls trying on as many glasses as they wanted to, and Penny didn’t even need them.  They let them try on a hundred glasses, or what seemed like it.  They were patient when the girls wanted to try on the crazy cat eye glasses or the pointy square glasses.  Eventually they narrowed Wendy down to five pairs, then three, then two, but they let the girls explore and have fun in the process of finding just the right pair.  No one judged them, no one told them no, no one worried they were going to break something (except perhaps me.)

While the girls tried on their fashion accessories, you told me about your concerns.  Based upon Wendy’s medical history, her medications, and her symptoms,  that I should speak to her specialists immediately, and that I should contact her pediatrician and make an appointment. You answered all my questions.  You continued that I should ask about a neurology consult and that this likely will lead to more tests.  All of these things you did firmly but not in a way to try to scare me.  You just let me know that something was wrong, it was serious, and we needed to look into it.  Then, and this is important, you helped me by telling me EXACTLY how to look into it.

I’ve been doing this a long time now doctor, almost nine years.  I pretty much consider myself a professional hospital parent, and I have to tell you that you did everything right.  Your exam was thorough, you were ok with the extra kid, you validated Wendy and her explanations, you explained your concerns to me, and you helped show me the way to the next step.

I don’t know what the outcome will be, this is a new needle in the haystack of Wendy’s medical conditions, but I want to tell you how much I appreciated our encounter yesterday.

Yours truly,

Darcy Daniels

New Faces At Grand Rounds

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One day while Wendy was in the hospital in late 2007, an endocrine fellow came in to ask us if we had any pictures of her that we would be willing to share.  The fellow was presenting Wendy’s medical case at Grand Rounds and she wanted to add a few pictures to  the slide show.

At the time, we didn’t know what Grand Rounds was.  Grand Rounds is an opportunity for doctors to present challenging or unusual medical conditions to their colleagues, along with what the course of treatment was, and allows a venue for the presenter to be challenged by his or her  peers.  It is a way to educate doctors both whom are going to the presentation and for the presenters themselves.  It was a novel approach to have pictures of Wendy in the slide show, because for the most part Wendy is just supposed to be a “case” to be discussed, not attached to a face.

I remember thinking that like other parents, someday I wanted Wendy to be famous, but I never thought it would be like that.

A few months later, I was approached to speak at Grand Rounds myself.  The Family Advisory Council at MGHfC spoke at one Grand Rounds a year surrounding the topic of family centered care, the idea that it is not just a child that the hospital is treating, but the family of the child as well. This Grand Rounds was designed to ask parents and patients if they had anything they felt was important to share with doctors of their children.  Michael helped me prepare as to what I was going to say, and I have to say I was nervous, but it was a really positive experience. The doctors asked good questions and it was all together well received.  The Family Advisory Council has sponsored Grand Rounds around conversations and communications between providers and parents, as well as asking doctors to speak as to how they have changed their medical practice as the result of having a sick child.  These are unique opportunities for doctors and parents to arrive at the same goal:  understanding each other in the quest to give the best possible care to children.  It has been an incredibly successful  endeavor.

Now, a new approach: having the pediatric patients speak directly to the doctors at Grand Rounds. This was the first time that an entire panel of speakers was all pediatric patients, at least at Massachusetts General Hospital, but I suspect that this is new territory for a lot of children’s hospitals across the country.

Wendy spoke yesterday with three other patients about their experiences.  All four patients were teenagers, (well, Wendy was twelve and the youngest), and they were all what we would call “frequent flyers” in the medical world:  they were patients who had been there a lot.  One teen had cancer of the jaw, one teen broke a vertebrae while playing football, and two teens had undergone kidney transplants.

The themes were rather universal and centered around anxiety and communication.  The teens asked to be listened to fully, have procedures explained to them, be addressed by their names and really be a full partner at the table.  Isn’t that what we all want in medical care?  What’s funny is that doctors know this, and I would be willing to wager that they think they are doing a good job at communication, especially those who work in pediatrics.  Yet the gap in communication remains.

Here’s why I think yesterday was most beneficial.  One:  people connect to stories, and these kids had stories to tell.  They are survivors in the medical world.  They have grit. And they are vulnerable enough, willing enough, courageous enough to tell their stories, to tell what could be improved upon, to their doctors.  Doctors don’t often get the opportunity outside of inpatient setting or the clinic to hear how they can improve.  Two:  a lot of these teens really made an impact on their doctors just by returning. They had been so sick and had such a positive outlook nonetheless, and they were succeeding in the world, not just as patients, but as people.  They were inspiring.  I don’t think that doctors often get to see their success stories years later, when patients leave they don’t come back, much like students and their teachers.  Both medicine and education have a long term return that you don’t often get to see:  the success of the child due to the efforts of the doctor/teacher.  After grand rounds, so many doctors came up to me to tell me how wonderful Wendy looked and how grateful they were to see her.

Pediatrics is a tough field, but one of the things that a doctor said yesterday is that it also garners hope, which is a powerful motivator. Those teens yesterday might not know how incredible they are, they just know that they have an extra burden of medical issues.  It’s the adults in the room who are affected by their tenacity in the face of adversity. Not just their tenacity, but their optimism and sense of self.  They are not patients, they are people.  They are success stories.  They have a voice.

This is the new face of medicine, partnerships in success through communication.  Yesterday was just one of the steps in the process.

A very welcome step.

 

The Magnitude of Small Choices

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We’ve tried really hard to let Wendy help to steer her medical road, but it hasn’t always been easy.

She got sick when she was three, so in the beginning, we did most of the steering.  But even still, we tried to give her as many choices as we could.  We would let her choose which finger she wanted to get her blood stick for her diabetes.  We would let her choose her 15 carb snack if she was low.  After a doctor’s appointment, we would let her choose where she wanted to go for lunch. You get the idea, little choices, but ones that gave her a stake in her own care, which we felt was important.

As she got older, she started to take more control.  She liked to negotiate with the phelbotomist or the IV nurse where she thought the best place for her IV site should be.  She liked to help flush the lines with the nurse.  She would ask for warm packs for her IV site or warm blankets if she was in the Emergency Room.

When she neared the age to go up to the next floor at the hospital, somewhere around 6 or 7, she would state very clearly to the Emergency Room nurse that she preferred to be on Ellison 17 (which is the younger floor) because she knew and liked all the nurses there.

When she is an inpatient, we choose to have bedside rounding, so the doctors all come into the room to discuss the problem and what the plan for the day will be.  She watches us ask questions of the doctors and we always ask her if she has questions, or has anything to add to the conversation.  Most of the time, she doesn’t have any questions, but it’s important to us for her to see the exchange as this is going to be a regular part of her life and she is a part of her care team.

When she is released and we have our normal clinic visits, on the drive in I ask her if she has any concerns or if she plans on asking the doctor any questions about her care.  We also talk about the right way to address doctors and nurses and I remind her that no screens are to be on when a doctor or nurse is in the room.

When she was ten years old, she wanted to start packing her own lunch, but she didn’t have much of an idea of carbs versus protein, so I set up an appointment with a nutritionist who went through it with her.  (She didn’t want to listen to me, I was her mom.) We set up a list of things that needed to be in each lunch:  a protein, a carb, a fruit, a vegetable and a dessert.  We made a list like a Chinese food menu, pick from columns ABCD & E.  We went to the supermarket so she could pick out her favorite fruit and vegetable for the week.  And we put down each item on the chart along with the carb count.  She would choose from ABCD & E, find the carbs for each, and create her own itemized list of the food on a post-it note to give to the school nurse, just like I did every day for her.

When she was eleven, we got her a cell phone so she could more easily go over to friends’ houses without a parent present because these were no longer little kid “play dates”.  She checks her own sugar, and texts me the information about how much she is going to eat, sometimes taking a picture of the plate so that we can figure out the carbs.  When she started sleeping over at friends’ houses, she sets herself an alarm at 2 am to check her own sugar, and then texts her father the number, to make sure that she is in the normal range.

She knows she gets sicker faster than other kids because she is immune suppressed and she knows to wash her hands before each meal.  Sometimes she snacks when she’s  not supposed to, but just like the rest of us, it’s hard to pass an open bag of chips and not take a handful.  She knows that she can’t have “open food” at a buffet, and she knows to get her food first when we are at a party before other kids “double dip” or lick their fingers.

When she says she doesn’t feel good, I ask her if she thinks it’s serious enough to go to the hospital and I trust her answer.  We talk about her symptoms, call the doctor, and make the best decision based upon the information we have.

I always tell her that we are a team and we will get through her illness together.

These are all conscious, concerted efforts.   It’s not easy to plan all of these ways to empower Wendy, but both Michael and I think it’s important. She’s twelve, and she has a lot of issues to deal with, but it’s important to know that she can take care of herself, both for her self esteem and for our peace of mind.  We want to nurture in her a strong sense of self, complete with all of her aspects.  We want to show here that we are a team:  her doctors, her parents and herself.  She needs to know that she can interact well and intelligently with the medical world, because she will need them for the rest of her life.  It would be so much easier to do these things for her, but it’s important to show her how to do them herself.  Like the old adage of teaching a man to fish, we are showing Wendy  how to navigate the medical world, trust her instincts,  and be a strong self-advocate.

Probably the road will get bumpy again as we encounter the teenage years, but that’s all a part of it.  It’s just important to lay the foundation that she can do this, we can do this, we are a team, and she will have us when she needs us.  It’s all any parent wants for their child, but it is both especially challenging and especially important for the parent of a chronically ill child.  It takes planning, preparation, determination and the willingness to watch your kids safely fail.

These small choices add up to a great result:  a strong confident woman ready to commit to self care and interact with her health care providers.

At least, that is the hope.