Learning to keep our daughter alive

Moms Sharing Miracles is a blog series dedicated to stories of Dayton Children’s patients shared by their moms! If you have a story to tell please email us at stories@childrensdayton.org

November is Diabetes Awareness Month

By: Cecelia Michel, Emily’s mom

I put Emily to bed the same time as usual. At seventeen months of age, bedtime was 8:00 pm, even on a Saturday night.  She fell asleep quickly as usual.  Dave and I sat and relaxed until we heard Emily cry just an hour later at 9:00.  I went up to check on her and she was saturated in urine.  It leaked not only through her diaper and pajamas but it was on her sheet and absorbed on the bumper pads of her crib.  She was fussing as I changed her bedding and pajamas, “I want milk.  I want milk.”  The request was odd, but I gave her a bit.  I put her back down and she continued to fuss.

It seemed so odd.

I tried to rock Emily to sleep but she just wasn’t having it.  So, for the first time in her life, I took her for a drive.  It was summer…mid June to be exact.  The neighbors were outside.  They saw me load Emily in her car seat still crying.  They asked if they woke her.  I wasn’t sure.  I drove through all the neighborhood streets… from one end of town to the other.  Her cute little face and curly red hair was staring at me in my rear view mirror.  She stopped fussing but was wide eyed, and she continued to ask for something to drink.

I drove home and Dave and I sat up with her until she wore herself out.  Two more pajama changes… a lot of urinating. She fell asleep around 3:00 am.  We decided to skip church that Sunday since we had such a rough night.  On Sunday she seemed back to normal, but I felt like I should not let it go.  I spoke with my parents and they mentioned that she looked like she had lost some weight.  My initial thought was that she’s a toddler.  Toddlers plump and grow, and plump and grow… this was a grow, that’s all.  Right?  Well, I began to wonder if it was a piece to the puzzle of the previous night.  I called Emily’s pediatrician that Monday morning, June 19, 2006.

Dr. Craig Horn saw us right away.  I told him about these odd symptoms that sounded vaguely familiar.  “Well, she is urinating… A LOT.  She’s asking to drink… A LOT. And she looks like she has lost some weight.”

Dr. Horn looked at me and Dave.  I can still see the deep concern he had in his eyes.  “It sounds like Emily has Type 1 Diabetes.” Dave and I cried right then.

Dr. Horn gave us a few minutes to gather ourselves. He told us to drive her to Dayton Children’s Hospital.  He said they would be waiting for us at the lab and he would call us with the results while we waited there at Children’s.

Within a few minutes, Dr. Horn called me on my cell phone, “Emily’s blood sugar is very high…  The Emergency Department is waiting for you.”

And just like that, our lives would never be the same again.  While in Dayton Children’s ED, we received a quick education of what Type 1 Diabetes was and determined what route of treatment we would take.  Emily spent a day in the Pediatric Intensive Care Unit (PICU) trying to lower her blood sugar and then a couple more days in a room on the 3rd floor.

There we met her first endocrinologist, Dr. Maria Urban, who just loved our little Emily too.  She and the staff at Dayton Children’s taught us how to keep Emily alive.  Our new lives consisted of counting carbohydrates of all foods and drinks she would consume… counting every Goldfish cracker and measuring every cup of milk.  We would have to check her blood sugars every few hours through the day and the night.  We would poke those tiny little fingers to check her blood sugar levels.  We would give her life saving injections of insulin to keep her blood sugar levels at a healthy range.

As soon as we were home with Emily we knew this was bigger than we were.  We decided the first week home would be spent trying to do things that could be a challenge with diabetes.  We started with the small task of making a home cooked meal.  Spaghetti.  Each noodle counted or weighed.

The next day we went out to eat.  Most all restaurants have nutrition facts, so that made it easy.  After that we went to the park with a couple other families we contacted through our local JDRF (Juvenile Diabetes Research Foundation) Chapter… because simple things like playing effect blood glucose levels.  Then our last task was a small road trip.  We drove to Indiana to the Indianapolis Zoo.  Why a road trip?  Because a sleepy toddler in the backseat can be misinterpreted as a diabetic slipping into a low blood sugar, and things like excitement and using energy can have its effects too.

We had to re-learn our daughter.

The following days and years since her diagnosis have presented their challenges.  We became frequent flyers to Dayton Children’s Hospital.  We were there every three months for her check-ups with the Endocrinology department.  We visited the ED multiple times because she was sick.  A simple cold, Asthma attack or tummy bug has its effects on her blood sugar levels and can make things turn very dangerous very quickly.

Dayton Children’s has always done such a great job at taking care of Emily.  To be honest, they have literally taken care of our whole family…with such a huge amount of care and compassion.

Nine years have passed since her diagnosis.   Emily’s original Endocrinologist retired and we now have Dr. Paul Breyer at Dayton Children’s.  He is so good with Emily and has helped us so much with her insulin dosages and encouragement for her care.  He has helped with getting a plan in place for her to attend school and be able to be a carefree child like all the others.

Technology has changed in these nine years as well.  Emily started her treatment by taking shots.  She had multiple shots throughout every day.  When she was 4 years old she received her first insulin pump.  That changed her treatment in that instead of getting four to six shots a day we would give her insulin through her pump and would change her pump site every two to three days.

Four years later we started a new pump (her current pump).  The OmniPod tubeless pump.  Emily was able to continue the same treatment of the previous pump…just with a little more freedom not using tubing.  Then two years ago we began using what is called the Dexcom CGM (Continuous Glucose Monitor).  Her Dexcom is another site that she wears that has a canulla that stays under her skin and checks her blood glucose levels every 5 minutes.  It alarms when she goes High or Low.  I DON’T KNOW HOW WE SURVIVED WITHOUT THIS PRODUCT!

It was and is only by the Grace of God that she is alive and growing.

It’s a complete joy to watch our children grow.  We are comforted with the tools we have to keep Emily alive.  This disease has no cure. We have to think of her health at all times.  Emily has to think of her health at all times… it surprises me to see how smart and active and capable she is despite always being conscience of how she feels at all times.  Emily is in all advanced classes in school, she plays the piano, and she takes Hawaiian Dance.  Type One Diabetes is one tough disease to manage, but Emily is stronger than Diabetes!

 

 

 

Comments

  1. Reply
    Patricia Levin November 28, 2015

    We have a friend whose son has juvenile diabetes.  I never knew how difficult it was to manage
    this disease before I read this article.  It is wonderful the lives of these children are becoming
    more manageable with products like Dexcom but it is still very challenging for parents and
    children.  Hopefully, some day this will be a disease of the past, possibly with stem cell technology.
    i have seen adults who have type 2 diabetes helped by pancreas transplant.  These people
    need to be on antiregection medicine for the rest of their life  so this is not what one would want
    for a child.

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