The Magnitude of Small Choices

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.

 

 

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Review: “Miracles from Heaven”

Confession:  I dreaded going to this movie, and I thought I was going to hate it.  Maybe I wanted to hate it, but that was just a product of my own fear.  It was impossible to hate it.  Be warned, there will be spoilers in this review, but if you’ve seen the trailer, then you already know everything there is to know about it.  If you would like to see the trailer, here is the link.

The plot is as follows:  The Beam family are a normal, everyday, God-fearing, southern family.  You like them almost immediately.  Their middle child Annabel comes down with a mysterious, incurable chronic illness that is both difficult and painful.  They go to multiple doctors to get answers, and get nowhere for a really long time.  It tests their marriage and their financial security as well as their faith.  Finally, they find a doctor at Boston Children’s Hospital who can’t cure their daughter, but can give them hope both with his knowledge and his bedside manner.  After multiple trips back and forth from home to Boston,and  lengthy hospital stays, Annabel is still in terrible pain and not much more can be done for her, so they send her home. While she is home her older sister talks her into climbing a big dead tree with her on their property, and when the branch they are sitting on is about to give way, Annabell jumps to a hole in the tree, falls through the trunk all the way down thirty feet, and is unconscious.   Rescue teams recover her and she turns out to be fine.  Better than fine.  She turns out to be cured of her terminal illness.  She tells her parents while she was unconscious that she had an out-of-body experience, met God, and he told her that she was going to have to go back, that she was healed.  The doctors can’t explain it, she is asymptomatic and does not require medication.  It’s a miracle.

There are subplots that I don’t love, like when the good meaning church ladies come to the mother Christy and ask if it was her sin or the sin of her daughter is what is keeping her daughter from getting healed by God.  This causes Christy to stop going to church, and is in fact the exact opposite of what a church community, or any good community is supposed to do:  they are supposed to support each other during the hard times, and what could be harder than having a child with an indescribable, incurable illness?  Casting judgement about a person’s spiritual guilt is a beyond petty, it is downright cruel.

But some parts are right on.  Seeing both the pain of the child, and the pain of the parents was very real.  There was one part where the parent was asked to hold down the child so that the nurse could perform an uncomfortable procedure.  I can’t tell you the amount of times Michael and I had to hold Wendy down for blood draws and IVs, participating in the needed trauma that had to happen.  Also the part about the parents being frustrated with not being able to get answers, and being stopped by hospital policy.  I’ve addressed this in my blog post Courteous Vs. Helpful, where hospital staff can be advocates for the parent or just polite.  Compassion of the staff make all the difference.

Another part that was real was how a child’s illness effects everyone.  The child, of course, to whom these horrible things are happening, but also the rest of the family, their friends, their community.  Everyone gives something up.  In the movie, the father had to sell his motorcycle to pay bills. The older sister misses her tryouts for a soccer team.  They all give up pizza because Annabel can’t eat it.  Annabel’s medicine schedule, on a whiteboard calendar, sits front and center in the dining room, a constant reminder that their lives are not the same, but they stick together and they tough it out because that’s what families do:  they support each other, they love each other.

The most powerful message, however, comes at the end, once Annabel is healed and they return to church.  Christy delivers the sermon, and though she is grateful for the miraculous healing of her daughter, she tells the congregation that miracles are everywhere.  This is the important part.  Miracles are the actions that others perform to support the people in need.  The neighbor who watches the kids.  The waitress who befriends them while they are in Boston. The receptionist who fits them in to the schedule.  The doctor who gives them hope.

This is what I can’t stress enough, because when Wendy was at her sickest, we had a whole network of people both seen and unseen who helped us.  Whether it was taking care of our house, watering our plants, feeding our cats, offering us places to stay, sending us gifts, bringing us Thanksgiving dinner, praying for us, helping us to move, calling to check in, offering up their sick days, taking the time to come up to Boston and help, all of these things are  miracles worth celebrating.  Never underestimate what your small effort can do to help a person.

The name of the movie really should be “Miracles are Everywhere.”

Ultimately, the real shame is that Christy Beam realized it once her daughter was healed, and not before.

Bring tissues if you go to see it, and let me know what you think.

Here is a link to the real Beam family, from People Magazine.

 

Sometimes You’re Not Ready

Sometimes you’re not ready to hear the bad news.

Bad news:  the news the doctors need to tell you, the diagnosis, the prognosis, the estimations, the best guesses.  Sometimes, even if you want to be, emotionally you’re just not there yet.

When Wendy was struck with her initial illness,  the doctors didn’t have a lot of positive things to say.  She was incredibly sick, and if she survived, there would be a lot of lingering health problems to contend with.  I could tell just by the looks on their faces during morning rounds that things were not going well.  Many years later, the division chair of Infectious Disease told me, “I dreaded coming into your room every day, because I never had any good news for you.”

They did their best to deliver the bad news to us slowly, and sometimes we were receptive to it, and sometimes we weren’t.  It is hard to hear from anyone that your world has been completely altered and some doctors are better at delivering bad news than others.

I remember one of the first doctors who came in to deliver bad news.  It turns out that Wendy’s pancreas was pretty much destroyed, making her an insulin dependent diabetic.  Unfortunately, that is  how the doctor opened the conversation, over Wendy’s hospital bed, in the Pediatric Intensive Care Unit.  She looked at me and said, “Don’t worry, some day in the future Wendy will come to you and want a cupcake, and you’ll know that it’s so many carbs, and you’ll give her the insulin.”

And I remember thinking,  in that moment, that she was absolutely crazy.  I would never, NEVER, be that ok with giving my daughter insulin.  I thought that she might as well be telling me that I’d never notice that hook she now has for a hand and she will eventually learn how to tie her shoe. (Just an example, Wendy’s hands are fine.)  I remember thinking that it was all too overwhelming to bear.  Blood sugar checks eight times a day?  Shots?  Carb counting?  Seriously, What the Hell?  How could this doctor be so callous in her delivery?  Didn’t she have a heart?

A few years later, when Wendy was in kindergarten, a student brought in cupcakes, and the nurse called me.  I approved the cupcake, instructed the nurse to give her insulin for sixty carbs, and hung up the phone, no problem.

Instantly I remembered that day in the hospital.

Damn. That doctor was right.  I just wasn’t ready to hear it.

While Wendy was initially in the hospital, other days were harder.  The day the doctors took us into the conference room to break the bad news about Wendy’s long term condition.  The charts we had to look at, the medicines we would be expected to give.  I remember crying so much that there was no point in trying to stop the tears with a tissue, they just silently ran down my face.  The doctors looked at me with pity and said, “We can do this another time,”  and I replied, “I’ll cry like this then too, let’s just get it over with.”

I later learned that the doctors call that particular conference room the “Room of Doom.”

Then the  the doctors told us that Wendy would need a kidney transplant.  Almost every doctor in the practice told us at different times.  The first doctor told me early on, in the parking lot, in passing.  I hoped he was joking.  Two others told us while Wendy was in the hospital.  One told us in the outpatient clinic.  It wasn’t a sit down intervention style of news breaking like in the “room of doom”, it was just giving an idea of what was coming up in the near future. No tears those times, because the news seemed so abstract.

I remember meeting with another mom whose daughter had a kidney transplant, who told me that I’d likely have to quit my job permanently to take care of all of the details of Wendy’s illness, and the tears came back in a flash. Nothing was going to be the same again.  There was no pretending that it would be like it used to be, I was the mom of a chronically ill kid and all the rules had changed.  It’s fear of the unknown combined with the crushing knowledge of what you ALREADY know that makes it so hard to bear.

Sometimes the messenger IS the problem, like the doctor who tells you bad news like ripping off a band-aid.  It stings and you wonder if they couldn’t have been just a tiny bit more gentle. An ophthalmologist once  told me that it didn’t matter how well we controlled Wendy’s blood sugar, that she would probably go blind eventually anyway.  That could have been more tactful. I still wonder why she said it that way. Some people don’t think about the consequences of their words on a patient or her parents.

Even if the doctors do the best they can to tell you, even if they explain it clearly, even if what they says makes sense.  Sometimes you’re just not ready.

But you will be.

With time. With Healing.  With understanding.  With education.    With support.  With love.

Be gentle with yourself and this journey.

You will be ready to hear the bad news, and move forward.

 

Everybody Pees

Perhaps you have heard of the book, Everyone Poops by Taro Gomi.  The premise is simple, that pooping is the one thing that all animals do.  It’s supposed to be a fun look at the world in a childlike way, talking about a taboo subject in a lighthearted manner, with simple, silly pictures that will make little kids giggle and yet teaches an entry to egalitarianism.

I was reminded of this book because I recently watched the video Everybody Pees, sponsored by the National Kidney Foundation.  It’s a clever cartoon with a catchy tune that encourages everyone to get checked for kidney disease. Watch it with your kids, they will love it.

World Kidney day is March 10th.  I’m sure not a lot of people have sat around thinking about their kidneys in the same way that I have.  You see, when Wendy was very sick her kidneys shut down.  She didn’t pee for about three weeks. Then her kidneys were damaged and sort of did a slow march to End Stage Renal Disease, otherwise known as kidney failure.   It’s during that time you realize how important kidneys really are, and how much they do for the body.

Not only are kidneys your body’s way to get rid of toxins, but they also do a lot of other things. They help make red blood cells.  They regulate blood pressure. They help to keep bones strong.  When your kidneys aren’t working, not only do you need dialysis, but you also need lots of medicines that try to take the place of your kidney, and they do a fair but not great job.  We also had to spend a lot of time regulating what Wendy ate and drank before her transplant.

When your electrolytes are off, your whole body feels awful, and a lot of people who are waiting for transplants often feel fuzzy headed and sleep a lot.  It’s their body’s way of managing the weirdness.

You might also be unaware that kidney transplants don’t last forever.  Wendy had one seven years ago, and that’s a nice run for a kidney.  She will probably have another kidney transplant in the next couple of years.  Right now her grafted kidney is working but starting to show its age, and it will be a slow deterioration of function until she will be on dialysis again.

Why am I writing this to you today?  Two reasons.  The first is take care of your kidneys.  Go to http://www.worldkidneyday.org/ to find out how to take simple steps to make your kidney last longer.

The second reason is simple.  Register to be an organ donor at http://donatelife.net/.  You won’t need those kidneys when you are gone, and you will be saving someone else’s life.  I have written an open letter to the mother of my daughter’s kidney donor here, and if you haven’t already read it, please do.  It’s so important to get the word out that you can do good with just a simple registration.  Think of the life you will be giving back to those who are waiting to live again.

I will be in Berlin on World Kidney Day, toasting the good health of my daughter, the generosity of her kidney donor’s family, and that the long wait for those on lists will soon be over.  Kidney donation saved our lives.

Happy Kidney Day!