Six months ago, on Dec 4th, 2013, an annual doctor checkup landed us in the Lucile Packard Children’s Hospital’s Emergency Room.
We had been very healthy, and were unprepared by the sight of the ER. It was packed with miserable-looking sick people, waiting to be seen. I feared that we would be stuck there all night, and we were going to miss our dinner.
“Don’t worry. You won’t be waiting here long. You will be seen shortly.” the nurse that checked us in told me plainly.
She was right. We were expedited thanks to our primary doctor who had called us in and made arrangements for us. We were a real emergency.
A hospital staff escorted us to another area of the hospital.
It was their pediatrics’s ER room. I vaguely remembered a colorful room decorated to please young children, with cartoonish posters hung on pastel colored walls, and toys on the tables. The room had very comfortable couch for the parents to sit in.
We sat there with one other family. Their toddler was playing with one of the wooden toys. The mood in the room was grim. Various smiling nurses and ER physicians came in to greet us and tried to calm our nerves.
Soon, we were lead into a room that had just been prepared for us. It had a hospital bed, with a nice flat screen TV hanging from the ceiling. Also in the room was a desk and chair. My 13-year-old promptly plopped down there, and proceeded to do her homework.
The kind nurse told us that there were many cartoons and Disney movies to choose from. But before we started any movies, she helped my 10-year-old into a hospital gown, and settled my baby onto the bed.
As soon as a Disney movie was started, physicians and nurses started to come in and out to check the baby’s vitals, and drew blood.
They started an I.V. for the baby to provide for the nutrient for her missing dinner, and to make drawing additional blood work easier. I wasn’t hungry for my dinner. I had long lost my appetite.
They threatened to keep us overnight.
Around 10PM, an ER doctor entered the room and introduced himself.
“We won’t have the blood test results until tomorrow. But we are fairly certain that your child has Type 1 Diabetes.” said the young doctor. Clearly, he was used to giving people terrible news all day long.
DIABETES??! How could this be? Isn’t this a disease for old people, and people who tend to be a little rounder than the general population…I looked down at my baby, who looked thin, who had lost a lot of weight recently. Who was intently watching her Disney movie.
“We can discharge you, and let you all go home tonight. But you must promise to bring her back to our hospital first thing tomorrow morning.” said the doctor.
His discharge offer sounded as if we still had time to just run away from the disease.
Early the next morning, we arrived at the hospital’s pediatrics’s endocrinology clinic. They were expecting us, and after filling out a few forms, we were conducted into a room with a table and some chairs.
We were warmly greeted by 2 or 3 doctors, and two diabetes educators. They introduced themselves as our diabetes team.
The disease comes with its own team? This wasn’t comforting.
We spent most of the day with Barry.
Barry had a warm smile and kind eyes. He spoke with a certain clarity and directness. His mild mannered sense of humor was a god send. These qualities enabled him to effectively articulate all the horrors of living with Type 1 Diabetes while curbing mothers from submitting into uncontrollable sobbing.
“Two things first.” Barry.
“First. I want you to forget all that you have heard or know about Diabetes.” Barry, waving his hands no wildly.
Lucky! I already knew almost nothing to nothing about Diabetes. It doesn’t run in our families.
“Most of what you heard, or what’s out there about Diabetes is for Type 2 Diabetes.” Barry paused, then continued:
“Type 1 Diabetes is nothing like Type 2 Diabetes. They are entirely different.”
“Type 1 Diabetes represents about 5% of diabetic population. It mostly struck young children. That is why it used to be called Juvenile Diabetes. But we do have young adults being diagnosed with it also, so we call it Type 1 Diabetes now. It is the second most common chronic childhood disease after asthma.” Barry.
“T1D is an autoimmune disease. For unknown reasons, the patient’s own immune system starts to mistakenly attacks its body’s own cells. Specifically, the beta cells in the pancreas responsible for making the hormone insulin. With these beta cells destroyed, the body no longer makes insulin, which cause blood sugar level to rise. The child develops Type 1 Diabetes and becomes insulin dependent.” Barry, our educator.
“How is Type 2 different?” me.
“Type 2 diabetics have working beta cells in their pancreas, and produce insulin. But their bodies grow insensitive to insulin, and do not respond to the hormone, causing their blood sugar to rise. They are not insulin dependent. So, they often prescribed with strict dietary restrictions, and heavy exercise. Sometimes, they are given medication to help their body more sensitive to insulin.” Barry.
“Here is my second point to make.” Barry.
I looked at him wide eyed.
He pointed at my baby, and said, “It isn’t your fault that you have Type 1 Diabetes.”
He then pointed at me, and said, “And it isn’t your fault that you child has Type 1 Diabetes.”
“Oh, bless your heart.” I said to him weakly, and may have shed a tear there.
Barry smiled, and explained further to the baby, “You didn’t get your diabetes from eating too much candy, or if you like sugary cereal for breakfast, or maybe you had an extra muffin one day.”
He then bend low to face the baby and grinned, “So, the good thing about Type 1 Diabetes is that there is no dietary restrictions for you at all. You can continue to eat as you please.”
The baby was smiling big. She was probably relieved that she is not doomed to eat boiled vegetables. I was gravely misinformed, and may have warned her that people with diabetes can only eat boiled vegetables and not much else.
“Another great thing about T1D is that with good management, you can continue to live a healthy long life, and you can do anything you want with you life.” Barry.
Then he turned on us, and gave us a long list of the bad things about T1D. It hit us like a ton of bricks.
T1D comes with an evil treatment plan.
, it stands for multiple daily injections. We must inject our 10-year-old with insulin whenever she eats meals or snacks with carbohydrates.
“For how long?” I asked.
“Well, there is no cure, remember?” Barry sounded sorry.
“Forever!” me. I tried really hard to not cry. I didn’t want to freak out the baby.
We spent the rest of the day practicing pricking our fingers to check for blood sugar, learning about food and their carbohydrates, and gave ourselves shots filled with saline solution.
Admirably, the baby did everything with great stride, not a single tear, and even with smiles.
After an exhausting 9 hours of T1D crash course, and feeling quite qualified to become a nurse, we were given a nice blue backpack filled with a huge binder with all the information. A starter supply of insulin, syringes, glucose meter, a phone number to check in with them daily, and Rufus, a teddy bear with T1D.
Rufus-our T1D bear from JDRF
We thanked Barry, and took our T1D home with us.
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