Scene of the Crime

On Christmas eve I had the unexpected opportunity to revisit the emergency room where my daughter was diagnosed with T1D.

I was the patient this time, having passed out on the kitchen floor of my in-laws' home first thing in the morning. It turns out that I probably should have been taking better care of the bronchitis that had been brewing over the preceding week instead of powering through Christmas prep, travel and time with family. The good news was that the experience was more surreal than serious and I'm making what promises to be a full recovery from both the bronchitis and the ribs I injured on the way down.

We lived two towns away from my in-laws when my daughter was diagnosed, so the drive to the hospital at dawn was familiar. Winding roads taken at a speed slightly over the limit, the beginning of daylight, anxiety and uncertainty. At the ER entrance there seemed to be an upgraded reception area, but the interior was about the same.

I was settled onto a gurney in an ER sized cubicle room and asked a hundred questions. A team of professionals got busy taking my vitals, taking some blood, and hooking me up to machines to continuously monitor my oxygen, blood pressure and heart. And all I could think about was 16 years and 3 days before, when I stood where my husband was standing. Out of the way, but in clear view, watching my daughter being hooked up to all of those things. And the interminable wait while they tried to get blood and insert an IV into her tiny dehydrated veins. I made out much better in that department.

Near the end of my 4 hour visit I was taken for a walk around the unit while hooked up to equipment to monitor my blood pressure and oxygen - making sure nothing dropped precipitously while I was upright and moving.

We passed the cubicle my daughter had been in. We saw the conference room where the doctor had taken us to discuss her condition. We walked over the place where I had stood with the helicopter EMT when she demanded insulin be started before transporting my daughter.

When I was released, I exited through the ER doors and we drove past the helipad from which my daughter and I had taken off, headed to the big children's' hospital in the city. We drove back to my in-laws' where my daughter had been hanging out with her grandfathers, playing cards, starting a crock-pot dinner and making and bolusing for her lunch.

A Bittersweet Week

Christmas is coming. The carols are playing...everywhere. We're making cookies. There are pageants and parties and concerts. The stockings are hung by the chimney with care. We'll gather with family this weekend. We'll attend a candlelight service. Santa will come. Gifts will be exchanged.

We'll enjoy all of those moments, but with a unique perspective.

Fourteen years ago we spent this week at a children's hospital. We'd been helicoptered there on December 21st with a very sick baby. We spent the night in the ICU and the week at the hospital. We spent the week grateful for life, knowing that our baby had been treated just in the nick of time. We spent the week scared and overwhelmed by the ways our world had changed with the diagnosis of diabetes. We spent the week surrounded by other hospitalized families, some of whom were not expecting as happy an ending as we had been granted.

The experience has forever added a bittersweet thread to our family's Christmas week.

This year's first tears came while I watched my daughter narrate the Christmas pageant on Sunday. I was overwhelmed with gratitude that she was there at all. The specter of what could have happened if we'd waited even hours more to take her to the emergency room lingers a little closer during this season. Hearing her beautiful voice and watching her smile at the little angels scampering down the aisle stood in stark contrast to what might have been.

I'll tear up when we sing 'Away in a Manger' at the candlelight service. I sang it hundreds of times to calm my baby in her hospital crib. I'll skip wearing mascara to the school holiday concert, and take a few deep breaths when I unbox a Christmas decoration we were given in the hospital fourteen years ago. I'll experience a flood of empathy when I encounter or hear about people who are spending this Christmas in a hospital, or in a shelter, or who are grieving or afraid this season.

The thread of Christmas 2002 runs through all of our future Christmases. While it's not a thread I would have chosen to weave into our family's story, it has added a depth of meaning to all of the Christmases that have followed. The thread reminds us that at the core of this season's stories there is light and hope despite the apparent darkness and despair.  As I wrote to conclude the first post I ever wrote for this blog:

My daughter’s second Christmas, when we sat together in the cafeteria of the children’s hospital eating prime rib off of Styrofoam plates, remains one of my favorite Christmases ever.  Despite all that we had lost in the preceding days, we had each other, we had the power of modern medicine, and we had hope. 

I've Been There.

What would make a new diabetes diagnosis easier for people?

The question has been rattling around in my head for a couple of months now.  Two events triggered it.  First, a friend's 8 year old relative was diagnosed. That event brought up all kinds of memories for me, and thoughts about what it must be like for them to enter this strange new world.  Also this winter, my dad was hospitalized for a very different type of issue, orthopedic in nature, but we had the familiar experience of being in a medical setting where people were speaking a language they  knew well and with which we were unfamiliar; and of being in a situation in which many aspects of life changed in a heartbeat with a long adjustment to follow. 

In the first few days after his hospital admission, my dad talked often about both staff and friends who had shared their experiences with his particular diagnosis.  A doctor had experienced the same injury and told of his recovery.  A friend said it took him at least six months to get back to normal.  A therapist knew someone who had benefitted from a particular kind of treatment.  There were, of course, conversations with the professionals about scan results, and medication options.  There were prognosis trajectories to be understood and discharge plans to weigh.  But in the end, it seemed particularly important to the patient to hear the stories of people who had been in his shoes. 

We were very fortunate that my daughter was first treated for diabetes at an excellent hospital and that we were able to return there for her ongoing care with an exceptionally knowledgeable team.  But what do I remember of that week and of the weeks following?  I remember talking with the nurse on the unit who had diabetes and who said  many reassuring things.  I remember every little word of practical and emotionally encouraging wisdom from our first CDE who also happened to have diabetes.  I remember being incredibly reluctant to attend a local support group and then feeling incredibly comforted once I got there. 

Several years ago, an eight year old girl we love was diagnosed.  The day after she returned home from the hospital, we were there.  We did not bring reading materials (well maybe a Calorie King book).  We did not discuss meter brands, or insulin to carb ratios.  We brought a set of colorful measuring cups, Clifford juice boxes, sugar-free jello jigglers and ourselves.  And we sat in their living room with them and listened. And we told them our stories.  We let them know we'd been in their shoes. They could see we'd made it out of the woods. 

There are few more comforting words than, "I've been there," especially when they're followed by, "and I promise it will get better."  This kind of support happens sporadically, with JDRF's bags of hope and with other, more local programs, but somehow even though we were at a major hospital in a big city, we were not formally hooked up with any peer to peer support upon my daughter's diagnosis.  How could that kind of reassurance become a bigger part of more people's stories?

Food: It's What's for Eating

An 8 year old relative of a friend of mine was recently diagnosed with type 1 diabetes.  A couple of weeks post-diagnosis, my friend e-mailed saying that the family is really struggling with what to feed him.  He was previously very much a junk-food fan.  What ideas and advice did I have?

My initial e-mail response was lengthy and probably a little confusing.  It's such a complicated and loaded question.

My first response was to look for good articles and posts on my favorite blogs and websites.  After twenty minutes of that, I found twenty different ideas of how best to eat with diabetes.  No wonder they and so many other newly-diagnosed families are confused. 

I imagine the hospital team sent them home with a meal planning guide and some hand-outs about carbohydrate counting and the value of consuming protein and carbs together.  He's on injections for now, so limiting the injections is part of meal planning too.  But he's 8.  And everything's different.  And he'd probably really like a big stack of pringles and a snickers bar.

So here's what I said in a nutshell, hopefully more well-thought out this time (I'll be sure to get them the link to this post):

1. If nothing else, count the carbs.  Learn how to read the labels, learn the carb ratio, learn the math and give the insulin.  A snickers bar is not an apple.  French fries aren't steamed brown rice.  But if you give the right amount of insulin for them, his blood sugar won't spike astronomically and you'll be learning and practicing the carb counting skills which will be the basis of diabetes care for the foreseeable future.

2. Rome wasn't built in a day.  Protein plus carbs is great.  The combination streamlines the blood sugar levels.  Vegetables, fruits, whole grains and low-fat proteins are important too.  Foods with fiber affect the blood sugar less than straight white bread.  BUT eating is great too, and sometimes compromise is necessary.  I had a child who ate nothing but cold cereal, milk, chicken nuggets, goldfish crackers, baby carrots, sugar free jello jigglers and animal crackers for several months of her toddlerhood.  She lived to tell the tale.  Not only that, but this weekend she ate Moroccan spiced chicken stew with whole wheat couscous on Saturday night and roast salmon, salad with balsamic dressing and a brown rice medley on Sunday night.  We actively chose (after a few weeks of frustration) not to force the food issue when she was 2.  Now she's a good healthy eater, because that's the way her parents eat and she slowly learned that a variety of foods are delicious. 

3. Dessert is okay.  We never stopped having treats.  One cookie instead of 3?  Yes.  Parsing out the Halloween candy over a couple of weeks.  Absolutely.  She had animal crackers and a glass of milk most nights until she was 5 or so.  Eventually, other cookies, frozen treats and brownies began to be included in the mix.  Holiday pies and birthday cakes have never been forbidden.  As a result, (I think) I have a kid who has rarely snuck extra treats or cried because she was left out of a celebration. 

Should this newly diagnosed kid be eating a scrambled egg wrap for breakfast, bean soup for lunch and a plate with 2 veggies, lean protein and whole grains for dinner?  Probably.  Should his primary treat be roasted almonds?  Yup.  But he's 8.  And his world just turned upside down.  And no kid or adult really eats like that anyway (well- very few, and they're probably not the happiest people). 

In the real world, balance is necessary. This newly diagnosed kid should be eating the healthiest combination of foods he's willing to eat on a daily basis.  He should be learning about good nutrition from his family, his healthcare team, and others who care about him.  He should be learning to read a nutrition label with help from adults, so that he can take the right amount of insulin for whatever he eats.  He should be learning about low carb and carb-free snacks he can eat when he's hungry but doesn't want to take an injection.  Meanwhile, his favorite foods should remain available and he and his family should learn how to cover the carbs in them. And he should have the occasional junk food if he wants it.  Having diabetes is hard enough as it is.

Our Angel Ornament

Thirteen years ago today, on the winter solstice, the darkest day of the year,  my daughter was diagnosed with diabetes.  It was four days before Christmas and we were supposed to be exchanging gifts at my in-laws' house before travelling for the week.  Instead we spent the day in two different emergency rooms and the night in the pediatric intensive care unit, curled together in a hospital crib, terrified by what was transpiring and by what we were learning was ahead of us.

 

In the midst of that dark day, this angel appeared, courtesy of the hospital's chaplain.  Angels, as we're reminded this time of year, are bearers of good news.  They remind their listeners to "fear not!"  They offer up explanations for confusing situations.  They bring light into the darkness.

For me, even thirteen years later, Christmas is still bittersweet.  There are moments every year when am reminded how close we came to losing our child to diabetes.  There are moments when I reflect on the surreal Christmas we spent at the hospital with Santa landing on the helipad to deliver toys and prime rib dinners in the hospital cafeteria.  There are moments when I look back on singing round after round of Away in a Manger to calm my baby during blood draws and examinations. There are moments when I consider the life which that week's events left us with, and wonder how we've managed to live it for so many years. 

But when I unwrap this angel ornament each year I am reminded that even in the darkest moments there is light.  I'm reminded as I hang it on the tree that in the midst of the confusion of that day in 2002, there were wise and helpful people who diagnosed my child, treated her appropriately, and saved her life.  I'm reminded each time it catches my eye that throughout that terrifying week, and through the years that followed, there have been supportive voices all along the way saying, "fear not."  I'm reminded as I pack it away each January that there is good news on the horizon, of treatments which will make diabetes less and less of a burden in the years to come.

I remain unable to sing Away in a Manger without becoming glassy eyed.  There are moments every Christmas season when memories of that dark week play out through my mind and leave me feeling angry and bitter, or sad.  But a glance at our angel on the tree serves as a reminder to fear not, that there is light shining through the darkness.

 

Did These Things Really Happen?

I feel like much of what I write about here involves changes related to growing up and gaining independence. So instead of today's regularly scheduled change-related topic, I went with a wild card choice for today's Diabetes Blog Week Post.  The prompt asks me to share the top 3 craziest stories I have about living with diabetes.  It goes on to say, "If you can't think of three, don't worry. We're just as happy with one or two..." That was not my problem.  Dozens of stories came to mind. So I created 3 categories and picked one from each:

Craziest Medical Experience:

This category has some solid runners-up.  There was the time the pharmacist suggested I have my daughter's humalog diluted by my veterinarian, and the time the lab tech slowly and cheerfully explained every detail of the blood draw.  But the winner goes to diagnosis day.  We'd been at our local hospital for a few hours.  We knew my daughter's blood sugar was 'very high,' but while several doctors and countless nurses had assessed her, there was (alarmingly, in retrospect) no diagnosis or treatment yet.  We were about to be loaded into a helicopter for transport to the children's hospital.  As I stood next to the transport EMT she turned to the doctor in charge and told him she would not put my child in the helicopter until he ordered an insulin drip.  I'm convinced to this day that after hours in the emergency room it was an EMT who first recognized that my child needed to be treated for diabetes.

Craziest Era:

The NPH days were awful.  They lasted for almost 2 years, while my daughter was between the ages of 1 and 3 at which point she started with  a pump.  They coincided with her short but ill-timed picky eating phase.  Here's a snippet of a piece I wrote about those picky months and having to eat when the NPH peaked:  I spent the first two months of 2003 trying, religiously, to stick to the “meal plan” sent home with us by our medical team.  Starch, protein, fruit, milk.  Every day at 1 p.m.  There was screaming and crying.  Yelling and throwing of stuff.   Sometimes she would throw stuff and I would cry.  Sometimes we’d trade.   It was reminiscent of Green Eggs and Ham, without the happy ending.  Would she eat it in her chair?  Would she eat it over there?  Would she eat it if I sing?  No…she won’t eat ANYthing.  We’d inevitably end up sitting on the kitchen floor, covered in yogurt or peanut butter, in an exhausted stalemate. And then there was a low blood sugar at 2 p.m., for which I’d have to squirt cake decorating gel into her mouth because she’d refuse to drink juice.  I eventually sought and received help from our excellent diabetes team.  But if I had to pick a time when diabetes sent me closest to the brink of insanity, this is it.

Craziest Encounter with a Muggle:

When my daughter was 4 years old, we were in line to enter a museum.  The woman behind us in line got my daughter's attention and asked, "Is that a t.v. you have there?"  I can still see my child's blank stare, and how it was mirrored on my husband's face.  "There...on your back?" she persisted.  Aha.  Lacking pockets, my daughter was wearing her pump in a waist pack with a clear window.  I took a deep breath and silently exhaled all of the snarky and sarcastic replies which came to mind.  Instead, as politely as I could, I replied, "No!  It's actually an insulin pump; to treat diabetes."  That stopped the conversation dead in its tracks. "Oh," replied the inquisitive lady.  She clearly thought this a much less logical possibility than that of a 4 year old wearing a television on her back.

Want to read some more crazy stories?  I know I'm looking forward to it.  We'll find the links HERE!

Elmo In Grouchland

There was, for some reason, a recent conversation about Sesame Street.

"Like in Elmo in Grouchland,"  my husband replied in response to some important point.

"I never liked that movie," my daughter piped up.

No wonder.

My daughter recalls nothing of her diagnosis story.  She was only 13 months old, too young to remember the emergency room, the helicopter ride, the subsequent emergency room, the intensive care unit or the excruciatingly slow days on the regular hospital floor.

We had some toys with us, and the hospital had some we could bring into the room.  We had a collection of picture books, and some crayons.  There were excursions for different tests and blood work.  The nurses came and went.  But a 13 month old in a hospital crib is tough to keep busy.  Up until this point, t.v. had not been a big part of my daughter's life, but this felt like the time to let her watch a little.  Anything, really, to make the time go by.

There was a t.v. in the room which had limited channels- especially for a 1 year old.  The PBS morning shows were about all we had.  She wasn't into Jerry Springer or Days Of Our Lives.  There was also a VCR  in the room (yes- my child is now 100 years old).  The selection of videos for anyone under 7 or 8, however, was tiny.

In fact, the only one we found which seemed relevant was "The Adventures of Elmo in Grouchland."

So we watched it.  Every day.  For 6 days straight.  If nothing else, we reasoned, we were all temporarily distracted.

My daughter has apparently seen it since, though I don't recall viewing it with her.  But then again, I don't recall viewing it the first 6 times either.

It appears 'The Adventures of Elmo in Grouchland' has impacted each of us in very different ways. How have we developed strong opinions on one hand and complete cinematic amnesia on the other?  I'll speculate:

For my daughter the movie is somehow intertwined with a week of her life which, despite not being able to recall the details, I'm certain she did not enjoy.  Subconsciously, I'd guess,  she connects that movie with a week of endless discomfort, stressed parents, and everything being very new and different.

For me, I don't think I ever really saw it to begin with.  It was on in the room, but I was so overwhelmed by the whole situation that I used that 73 minutes to zone out completely.  It was a rare moment in each hospital day when I could let my mind wander, assimilate a fraction of the new information coming at us, rest, and regroup.

Or the maybe the movie is just genuinely terrible and forgettable.

What I am sure of is that we'll never watch it again to find out.

We Forgot

Scrolling through my facebook feed this morning, I ran across a mention of someone's 'diaversary.'  Which reminded me that yesterday was my daughter's.

Twelve years ago yesterday we were supposed to celebrate Christmas with my husband's family before traveling to my parents' for the holiday itself.  Instead, we found ourselves speeding to the emergency room at sunrise, taking a helicopter trip to the Children's Hospital by noon, and spending  the night in a hospital crib in the pediatric ICU.  We spent 6 days in the hospital, including Christmas.

Yesterday we celebrated Christmas at home, so that we may more easily travel to the other half of the family for the actual day.  So immersed were we in those preparations and festivities that the significance of the date never even crossed my mind.

It's an age-old question in the diabetes community: 'Do you celebrate your diaversary, and how?'  We've never celebrated, per se, but we usually talk about it.  We talk about the day's chain of events, which remains amazing all these years later.  We talk about the people who visited us, and reached out to us, while we were in the hospital.  We talk about how great Santa was to us that year.  We talk about the years that have passed since then and all the good things they've brought.  We've become more well informed.  Technology has improved.  We've benefited from the help of some great professionals.  My daughter has gone from a helpless baby to a kid who is an active participant in managing her diabetes.

Perhaps these conversations are a celebration of sorts.  By reminiscing, we're lifting up some positive things. We were strong enough to make it through that first day and week.  We were and continue to be surrounded by friends and family who care.  We've learned.  We've sought out and been helped by excellent endocrinology professionals.  My daughter is learning how to eventually take the reins as she continues to live with diabetes.

The season in which this milestone falls never allows much time to reflect- if we remember at all.  But better late than never, tonight at dinner I'll plan to reminisce about just a little bit of the past 12 years' journey.

Thankful She Was Diagnosed

I'm occasionally reminded of how thankful I am that when she was 13 months old, my child was diagnosed with diabetes. 

She'd been fussy since Friday, wanting to be in our laps or close to us.  She wasn't sleeping well.  Saturday evening, she cried a lot.  Saturday night, she threw up.  By Sunday morning, she was lethargic, and seemed dehydrated.  The pediatrician told us to go to the local emergency room.

What seemed like gallons of blood were taken from her screaming little body.  It felt like hours before a vein was found for the IV.  Neurological tests were done.  Urine was taken.  We were then taken in a room by the e.r. doctor and told that our daughter was 'extremely ill,' and that he did not have a diagnosis.  He requested permission to perform a spinal tap to look for meningitis and possible other causes.  We agreed.  What choice did we have?  A couple of hours after our arrival, lab results arrived showing a high blood sugar (in the 800 range if memory serves) in addition to other chemical imbalances.  The hospital team continued to search for a diagnosis, unable to comprehend that a baby could have diabetes. Four hours after our arrival, we were in a helicopter on our way to the regional children's hospital.  That is where insulin was first administered, mostly I believe to this day, because the medevac team insisted upon orders to do so before they transported her.  Upon our arrival at the children's hospital, treatment for diabetic ketoacidosis was intense and thankfully successful.

Ten years later, I still hear stories like mine. A previously healthy child is brought to the pediatrician or the emergency room with symptoms which include lethargy, thirst, weight loss, stomach discomfort, headache, and exhaustion. A wide range of diagnoses are handed out, and too few of them are diabetes. Some of these kids are properly diagnosed in a day, a week, or longer. Some are not.

What if emergency room and doctor's office protocol for a child exhibiting 'flu-like symptoms' included a blood sugar check with a glucometer as part of the initial set of vital signs?

What if medical personnel were systematically educated on the signs and symptoms of type 1 diabetes onset in children?  What if they knew it was entirely possible and increasingly likely for babies to develop diabetes?

What if posters or flyers or e-mail blasts about the signs and symptoms of type 1 diabetes were regularly provided to medical offices for staff and patient education?

Tom Karlya of Diabetes Dad is currently collecting stories about kids who were lucky enough to be diagnosed when things could have turned out even worse.  These will be carried to Washington in hopes that some funding can be earmarked for an awareness campaign about Type 1 signs and symptoms. Nobody deserves to have diabetes, but every kid deserves to have diabetes if the alternative is death.