Tag: pediatrics

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.

 

 

Communicating During Crisis

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In the beginning of Wendy’s hospitalization, Michael and I arrived at Massachusetts General Hospital at different times.  I had first flown with Wendy from our home in Vermont to Dartmouth Hitchcock hospital in New Hampshire.  Then a few hours later when it had been determined that Wendy was in kidney failure, she and I were taken by ambulance to Mass General.  Michael and my mom followed later in the car, and typically, got lost in Boston because everyone does.

After we had both arrived and had gotten settled, one of the first things we did was go down to the coffee shop in the hospital.  We knew that we were in for a long haul.  Suddenly we were two states away, our parents were arriving, and we knew that things were going to be really tough medically, emotionally, financially, all of it.  In a whirlwind of chaos, we knew that we had to set down some guidelines for communication, and stick with them.  We were both horribly scared, but we knew that we had each other, and we had to keep our lines of communication open.  We agreed to some ground rules:

Be kind with your words.  “Don’t ever say anything that you can’t take back.” You know those words, spoken in anger, using absolutes like, “You Never” or “I Always”. Those aren’t helpful. We are a team and we will act like a team.

Be honest with your emotions. Just saying your emotions out loud makes you feel better because you’ve put a name to them. “I am scared” is a powerful phrase.  Don’t expect to have the other partner know how you are feeling, you need to state it.

Say when you need a break. Sometimes we need to take a step back, get a cup of coffee, walk outside and breathe a little fresh air. We would feel overwhelmed at some point in this journey. Those few minutes where you can separate and regroup your thoughts will save you in the long run.

I honestly believe that this agreement preserved our marriage.

These ideas didn’t fall out of the sky, we had done these things, more or less, over the years.  We had learned good communication through a number of avenues.  One way was living in the Czech Republic together. After dating for about a year, and after we had both graduated from college, we had the crazy idea that we would move to Prague and teach English to Czech students.  We didn’t quite realize the situation we had put ourselves into.  We had arrived in a small town well outside of the city and were essentially the only two people who spoke English.  Unlike western cities that had dual languages for menus or bus schedules, everything was only written in Czech. This made for humorous meals at the local restaurants when all we could do was point to something on the menu and hope for the best.  The other “English”teachers in our schools were the former Russian teachers, who were told overnight that they needed to switch to teaching English or face losing their jobs.  Not only was their English not good, but they weren’t thrilled to have native speakers teaching along side them.  We were on our own.

Michael and I lived in a single converted classroom in one of the two schools in town.  It was inconvenient, especially because it also housed the early care for children, who liked to just walk in to see what we were doing.  There was no telephone, and it was only the dawn of social media.  The situation was less than ideal.

We realized quickly that if we had an argument that there was no one else to talk to in the whole town.  Necessity became the mother of good communication.

Prior to that, we also had experience with something called a “Full Value Contract” from Gettysburg College, where we both attended.  A full value contract was introduced to us through Gettysburg Recreation Activities Board, or GRAB.  The idea was that everyone had an equal say and it was up to the individual to be clear with how they were doing, as no one is a mind-reader.  Neither Michael nor I were in GRAB, but one of our best friends, Hutch Hutchinson, was one of the first student leaders, and he led trips for student groups, including groups that we were in.   Michael and Hutch hiked 500 miles of the Appalachian Trail together.  (Hutch continues this work at Boston University, where he leads the Common Ground seminar for first year students.  You can see a video of it here.)  “Full Value Contract” was a part of the vocabulary we brought with us to the Czech Republic, and it served us well.

Lastly, Michael and I knew that when we were stressed, that we used a certain “tone”.  You know that tone.  It’s 50% of communication, and when the words and the tone don’t match, it’s the tone that trumps the conversation.  Way before we got married, we agreed to state when a day was going to be stressful.  We would say, “Today is going to be tough, so I want to say I love you now, in case I forget later.”   This might include buying our first house, or going on a trip, or going into labor and having a baby.  This was an inside joke, almost a code for us that we needed to treat each other well not knowing what the day held in store for us.

We brought all of these tools with us to the hospital, and yet we still felt the need to take time away and actively state our three ground rules for communication when we got to the coffee shop.  This isn’t the recipe for every happy family in the world that is going through the trauma of a chronically or terminally ill child.  But what I’m saying is that you have to find what works for you, what will sustain you even through the darkest times.  Only you know what will work for you and your partner, but they key is to find it, agree to it, and stick with it.

It will serve you well in the long run.

 

Dear Mom of My Daughter’s Kidney Donor

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Dear Mom of My Daughter’s Kidney Donor,

In just a few days we will celebrate the seventh anniversary of my daughter’s life saving operation, the successful graft of your son’s kidney.  Every year I prepare for this day, that is filled with such conflicting emotions.

You see, my daughter was so very sick and had been for almost two years at that point.  She was on five different blood pressure medicines.  Her heart had been weakened.  She was only allowed 750 mililliters of fluid a day, that we handed out to her a tablespoon at a time.  She was on fourteen different medications, that we gave to her every two hours around the clock.  We checked her blood pressure twice a day.  We checked her blood sugar eight times a day.  She was on a low potassium, low sodium, low magnesium diet.  She had two doctors’ appointments per week, one blood draw per week, and we spoke to her doctors twice a day on the phone.

Our lives revolved around keeping her alive.  There was no respite.

It was difficult to acknowledge  that I couldn’t be the donor, nor could my husband, nor could any immediate family members.  We had to jump through the hoops of getting on the list for a deceased organ donor, and we had to fight the insurance company to let us have the operation at the hospital that we considered to be our medical home, rather than the hospital on the other side of the city that the insurance company did the most business with.

Weeks went by and she continued to fail.  The doctors kept saying “Keep her healthy, the kidney is going to be coming soon.”  Her blood pressures were increasingly more difficult  to control.  I remember planning for her fifth birthday on January 9th, a swimming party at our local pool and while getting all of the decorations ready, breaking down and weeping because I wasn’t sure that she was going to have another birthday and then pulling myself together because it was going to be happy, dammit, it was going to be her best birthday.

We had a false alarm.  A kidney was ready.  We raced to the PICU, we brought her to surgery.  We went upstairs and waited.  The surgeon looked at the kidney and turned it down.  We were devastated.  I  can’t tell you how horrible that night was.  Wendy had finally reached the point where she had to go on dialysis, and so a few days later she went back into surgery to have the catheter placed.  I had to go for training to learn how to run the dialysis from home.  Supplies were ordered and sent to our apartment near the hospital.

To add to the worry, I was six months pregnant and wondered how long I was going to be able to keep everything together. These memories always are accompanied by the heaviness of pregnancy.  I wondered when the baby arrived, if I was going to be able to do everything that needed to be done.

On the night of January 31st, Wendy was in the hospital recovering from her catheter placement.  The nurse came in excited.  There was a kidney on its way.  We were to prep for surgery.  Now.  Wendy’s nephrologist came over from her home and brought Wendy a snow globe to keep her busy while we got her ready.  It was a weekend, at night, so the operating floor wasn’t busy.  In fact, it was really, really quiet.  I wasn’t allowed to go into the surgery with Wendy because of my pregnancy, so I waited in the hall, looking in to the surgery theater when the door opened.

I remember when the fellow walked down the hall with the kidney.  In my memory, the hallway feels very long, but I don’t know if it actually is in reality.  The kidney was in a wax covered cardboard box. The fellow carried it carefully, but had to put her mask on before entering the surgery room, and so she held onto the box with one hand and put the mask on with the other, and I worried that she would drop it!  Seriously, don’t they have a cart or something?

Finally, Wendy got settled, they got started, and we had to wait.  Again.  We got the call that everything went well and we were to meet them in the PICU around 2 am, February 1st.  We saw her come up in her bed.  The kidney had already produced urine.  After almost two years, it felt like a miracle.

From that day forward, she has continued to thrive.  Medicines were shaved down and removed altogether.  She progressively got stronger and stronger, exceeding what her doctors even expected.  Today, she runs a mile in under seven minutes, she competes in triathlons and wins them.  She plays soccer, skis, swims competitively.  She is an amazing and compassionate kid, a good big sister, thoughtful beyond understanding.  She is the kid that gets up for the old lady on the train.  She is the kid who gives her balloon up when the toddler loses his to the air above.

She still has hurdles, still has health issues.  She is still a diabetic, she still takes medication daily, worries about infections, has some dietary restrictions.  But in comparison these are manageable things.

We call the anniversary of her transplant her “Kidneyversary” and celebrate it like a birthday, with friends coming over, chili for dinner (kidney beans!) and a cake.

But, Mother of my Daughter’s Kidney Donor, I have felt guilty about celebrating the life of my child when your child has died.  That the best day of my life, the fulcrum of it, the time stamp where everything else is measured against it as “before the transplant” or “after the transplant” seems horribly unfair knowing that it is also the fulcrum for your life as well but for the opposite reason, the nightmare of every parent.

My only solution to this has been to make the official date of the transplant in my mind be February 1st, when the surgery was finished, not when it began the night before.  On the 31st of January, I give you the day to mourn, and I mourn with you, for the life of your child,  your fourteen year old boy, who would have been twenty one this year.  It is the next day that I celebrate in gratitude for your amazing gift to my family.

Wendy knows about your son, that her kidney is  a “boy kidney” as she calls it.  We give thanks to you and your family at our holiday toasts, I give thanks for your every day in my morning meditations.

I guess ultimately, what I want you to know is how often I think of you, and your son, and your sacrifice.  Your gift is truly a gift of grace, one that you gave and expect nothing in return.  In fact, your gift can not be measured, and there is nothing I can do to repay  you.  I can only be grateful.

This letter is written to you to let you know that I truly am.  Thank you, thank you, from the bottom of my heart.

Sincerely,

Darcy Daniels

Link

Courteous Vs. Helpful

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Wendy and I have spent a lot of time in various doctors’ offices lately, and I’ve been reminded that there is a right way and a wrong way to treat a young patient and her family.

Here’s an example of a doctor’s visit that didn’t go so well last week.  It started late in the afternoon, after school.  The doctor was new to us, arrived fifteen minutes after we were in the exam room, did not introduce herself, nor called me anything but Mom.  She did not address Wendy by her name once.  We were there because Wendy had hurt her knee, but the doctor asked a lot of questions about her medical history.  It bordered on nosy.  Granted, Wendy’s medical history is chock full, and I understand that there are a lot of questions, but not necessarily for a hurt knee, other than the fact that she can’t take NSAIDs like ibuprofen because it is bad for her kidney. The doctor also commented on her bifocals as unusual, again nothing to do with Wendy’s knee.  As we left (and thank God that Wendy was out of the room already) she said to me, “Don’t worry mom, she has to do SOMETHING the normal way.  Maybe her knee will be it.”

Unhelpful comment, doctor.  It is not your place to editorialize my daughter and her medical history.  It’s your job to tell us what to do about her knee. Meet us where we are in this moment.

Today we had a totally different experience.  We saw a doctor who has been following Wendy since the beginning of her illness, almost since the first day of it.  First, she saw us downstairs in line waiting for coffee and paid for our order. Then she met us upstairs, where we addressed concerns I had about medication and blood pressure.  She had the nurse come in both to say hello and to confirm medications and prescriptions.  She ordered labs, and though it was a new computer system, made sure that it was working, printing out the labs herself after the front desk couldn’t find them in the new system.  She looked at Wendy’s ultrasound, told us what it said, and we arranged for a meeting in a month.  She wished Wendy happy birthday, and we left.

Granted, this second doctor has known us for a long time, and we have a very special relationship with her, but that doesn’t mean that the first encounter with the first doctor was what we should be willing to accept as care for a child.  For the sake of argument, let’s say it is the difference between being courteous and being helpful, and it applies to everyone from the doctor to the receptionist at the front desk.

Being courteous is answering questions directly, but not necessarily providing any solutions for the patient or parent.  Being helpful is when you team with the parent, even momentarily, so that you can come up with a solution to the problem at hand, so that the parent doesn’t feel like they’ve been hung out to dry.  Being courteous is saying that your patient needs a test and it’s in Building Such and Such.  Being helpful is showing the parent how to get there, why it needs to be done, and what the results will mean.

Let’s face it, families are rarely in the doctors’ office because something good is happening. Therefore, the parent is often stressed.  The child is either sick or in pain, and additionally he or she can pick up on the parent’s distress.  Add to the mixture the traffic getting in, finding a parking spot, the possibility of getting bad news,  any new information that might be thrown at the parent, and there’s an overwhelming sense of doom in the waiting room.  No one is there because they want to be.

So it’s important to treat these families better, then say, someone who is ordering a double-tall-skinny-latte at the drive up window at Starbucks.  “I’m sorry, I can’t help you with that,” rings a little hollow when you have a sick kid in tow, knowing that tests will be ordered, waiting for bad news, in a room that (let’s face it) could be a little more child friendly.

The difference is compassion.  Compassion is the key to a successful trip to the doctor.

Compassion is the empathetic concern for the misfortunes of others, accompanied by the desire to help to alleviate that suffering.

Most people get into the health care business because they are compassionate people who want to make a difference in the world. They have bad days too, and hey, they’re human.  When you encounter a whole office that is merely courteous, however, then you know that something is wrong. Sometimes the system has beaten compassion out of them with deadlines to see so many patients per day, etc.  So for the sake of argument,  let’s go through some of the things that make a health care professional helpful.

Dear Health Care Provider:

Please read the chart before you walk in the door.

Please learn my name and don’t just call me “Mom.”  If it’s possible, learn if my child has a nickname.

Please tell me who you are and what you job is, and how you can help us.

Please listen to my concerns.

Please listen to my child and talk to her like she is a full partner in this process, because she is.

Please explain what the next steps are and what your concerns are; tell me why we are doing what we are doing.

Please follow up as promptly as you can with information on tests.

Additionally, the truth is that it’s the little moments, those little compassionate moments, that we remember in health care.  We remember when the doctor gets on the floor to play with our kid, we remember when they sing a song together.  We remember when the nurse looks for samples so you don’t have to immediately go to the pharmacy.

We remember when the doctor tells us bad news and holds our hand.

Ask any parent of a chronically ill kid about a compassionate moment that a health care provider showed, and they will be able to give you ten, because those are the moments that we WANT to remember.  It provides dignity and humanity to an already suffering population.

It is the compassion that binds us together, and it’s better for the bottom line. People who feel that they are valued come back.  The Schwartz Center for Compassionate Care in Boston has tried to measure compassion.  In this article, they show that hospitals that recruit candidates with compassion, train how to be more compassionate, and reward those members who show true compassion have better retention rates, and fewer return visits to the Emergency Department.

Compassionate Care makes a stressful situation better.

What if you’re not encountering helpfulness and compassion?  Some things I do as a parent include introducing myself to everyone in the room:  Doctors, nurses, medical students, you name it.  I introduce my daughter.  I give a brief history if the doctor hasn’t done so to everyone in the room.

If I am not getting the answers I want, I say so, sometimes not so nicely.  I have been known to say, “If I ask you a thousand questions you need to answer them, because I’m the mom” (Please note, this perhaps wasn’t my finest moment.)

If I’m nervous, I write down my concerns ahead of time to make sure we get to them.

I ask why questions.  “Why are we doing this test?  Why do  you think that?”

I thank the health care provider and try to name the thing they’ve done.  Every time. I make Wendy do it too. “Thank the Phlebotomist for the blood draw.”

I’ve also written complaints when something has gone seriously wrong with patient care.

My daughter is more than a diagnosis, she’s a person.  The health care system can’t just treat her, they have to treat the whole family.  It’s just the way it is.  We are a package deal.

If you are a health care provider, please consisder be more compassionate, more helpful, and not just courteous.  Just being courteous won’t get you anywhere.

Rather, it will encourage me to find a better experience for my daughter and my family.