November 11, 2005.
Lynda’s hospital room was small, and the floor, which I found myself staring at constantly, was tiled in blue. Purple and pink curtains were hanging over the vertical blinds across the large window. Her room was down a long hallway in 3 South, which is located on the 3rd floor of Children’s Hospital. This room wasn’t as cold as the room in the Emergency Department, but it wasn’t warm enough to call it cozy either. My daughter was watching, Ella Enchanted. Halfway through the movie the nurse walked in with syringes in one hand and insulin in the other. “Hello,” she said with a smile. “Time for insulin,” she pulled two latex gloves out of a box on the counter.
“I’m sure you’ve seen this done a few times today,” she said while filling the syringe with clear liquid from the little glass bottle. “Now it’s your turn to give it a try.” “Here we go,” she said while holding the syringe out to me.
It was a small needle with a thin point. As I took the needle from her I asked, “How many times a day does she have to use this again?”
“This one is only given once a day at bedtime,” she replied.
“Well, what about the other one? How many times does she have to use that one?” I asked.
“The Novolog is used whenever she eats or her glucose is too high.”
“Okay.” I paused and then continued “How long is she supposed to be on insulin?”
"The doctor didn't tell you?"
"Tell me what?"
Well unless a cure is found, she’ll be on insulin for the rest of her life.”
“But, don’t some people control it with pills?”
“That’s Type 2, your daughter has Type 1 Diabetes. She has to take insulin by injections or through an insulin pump. Right now there is no other method available to control her Diabetes.”
“Oh." I whispered as I stared down at the tiles on the floor. Perfect squares leading out of the room and into the hall. Earlier that day there must have been at least 3 doctors who asked, “Do you have any questions?” and I couldn’t think of any, not one. Now here I was pouring questions out of my mouth to the nurse, the same way the tiles poured into the hallway, one after the other. The nurse’s smile was gone. “The doctor will be here in the morning and I’m sure he can give you a better understanding of her condition.”
dn’t say anything.
“Are you okay” she asked.
“Yes, I’m fine.” I gave her a half smile and asked, “What do I have to do?”
“I’ve already wiped off this area of her arm with alcohol,” she pointed to the back of my daughter’s right arm. “Just pinch her skin up and insert the needle. Push the insulin in and count to seven before removing the needle.”
I looked at Lynda and told her not worry, it would only take a few seconds and then it would be over. She didn’t cry, wine or fidget. She was being a big girl. When the nurse left the room, I laid down on the bed with my daughter. She fell asleep within minutes. Her thin, four year old body looked so small. I got back up and tucked her in snugly. On the TV, Ella’s journey to find her Fairy Godmother continued. I sat in a chair and wrote down questions on the back of an envelope that I’d been carrying in my purse. There were a lot of questions. My knowledge of Juvenile Diabetes did not extend past the Mary Tyler Moore commercials that I’d seen on television and I couldn’t even remember what she was saying in them. I felt a little embarrassed about that. How could I have paid so little attention to something that affects so many children each year?
November 12, 2005
The doctor came early in the morning. He answered little of my questions. The questions he did not answer, he assured would be answered in diabetes management courses that I would be taking at the hospital. This didn’t make me feel any better. Besides, none of them could answer the most important question of all which was, “Why did this happen?” Juvenile Diabetes doesn’t even run in our family. I sat on the edge of the bed and sighed. According to the menu on Lynda’s bedside table, breakfast would be coming soon, which meant that I would have to check her glucose and give her insulin. I looked down at the floor. The tiles were made of two blue tones and they had a cream color lightly streaming through them. They looked like marble. Cold, hard marble that ended at the door, which was closed.
Classes started in the afternoon and there were three other families attending. I had a lot to learn. First off, I was told that Type 1 Diabetes is an autoimmune disease that causes the immune system to attack and destroy insulin-producing cells in the pancreas. Because she has Type 1 Diabetes, my daughter’s pancreas would not be able to produce any insulin at all. If she had Type 2, her pancreas would still produce some insulin, but not enough. There is no cure for either type.
In nutrition class I learned that the amount of sugar in her food would not determine how much insulin my daughter would receive. Just because a product is labeled, “Sugar Free,” doesn’t mean she can eat it without taking insulin. It’s about the carbohydrates and many sugar free foods still have “carbs.” When giving my daughter insulin, I was told to combine the amount of units for her carb. intake, with the amount of units for her correction dose, if her glucose was too high. If her blood glucose was too low, I would have to give her 15 grams of carbohydrates to bring it up to a normal level. If it was too low for her to take the 15 grams by eating or drinking, I was told to put cake icing in her cheeks. If her blood sugar was so low that she passed out, I would have to use a special injection that came in the Glucagon Emergency Kit.
When her blood sugar is extremely low, it’s called hypoglycemic. When extremely high, it’s called, hyperglycemic. I learned about Ketoacidosis, rapid-acting insulin and long-acting insulin. I was told that I would need to buy a scale and measuring cups to weigh and measure her food. I learned that every restaurant and fast food establishment is supposed to supply their guests with nutrition facts for the food they sell, if the person asks for it. I would later have to ask every place we ate out at, from Chucky Cheese’s to Applebee’s. The only place that labels their food is McDonalds. They label the wrappers and Kid’s meals.
I learned that schools, private or public would have to accommodate my daughter as they do any other child with a serious medical condition or disability. She is protected under the Disabilities Act; however, don’t mistake this as a reason for receiving Supplemental Security Benefits for a disability, because she would not be eligible for that.
November 13, 2005
On the 13th, I had a full day of classes. There was another nutrition class, and a class about sick days and how to treat ketones. I also had a couple of one-on-one sessions which I really liked. They were about simple things, like how to code her glucometer. The more I was educated, the better I felt. At the end of the day, the hospital gave me a multiple choice test on what I had learned. I did well.
November 14, 2005
Before my daughter was discharged, the hospital gave her a teddy bear named, Rufus, as a gift. He’s the official Diabetic Bear and he has patches sown on the spots where he gets his insulin shots. They also gave me a white binder. On the front cover it said, Managing Your Diabetes and on the first sheet of paper inside, there was a heading that read, “The Children’s Hospital of Philadelphia® Hope lives here.” I smiled and flipped through the book. It was full of instructions, information, charts and phone numbers. I felt confident. The hospital staff had done everything they needed to do to prepare us for our new life, and they did it within a matter of days. As I sat on the edge of the bed, waiting for her discharge papers, I looked down at the floor. The tiles had a baby blue and aquamarine mix of colors flowing through them. It looked kind of like cool blue water flowing toward the hallway, where white tiles met their edges, the same way white sand meets the waves of the Caribbean Sea. I felt relieved and thanked the staff repeatedly on the way out.
Lynda’s hospital room was small, and the floor, which I found myself staring at constantly, was tiled in blue. Purple and pink curtains were hanging over the vertical blinds across the large window. Her room was down a long hallway in 3 South, which is located on the 3rd floor of Children’s Hospital. This room wasn’t as cold as the room in the Emergency Department, but it wasn’t warm enough to call it cozy either. My daughter was watching, Ella Enchanted. Halfway through the movie the nurse walked in with syringes in one hand and insulin in the other. “Hello,” she said with a smile. “Time for insulin,” she pulled two latex gloves out of a box on the counter.
“I’m sure you’ve seen this done a few times today,” she said while filling the syringe with clear liquid from the little glass bottle. “Now it’s your turn to give it a try.” “Here we go,” she said while holding the syringe out to me.
It was a small needle with a thin point. As I took the needle from her I asked, “How many times a day does she have to use this again?”
“This one is only given once a day at bedtime,” she replied.
“Well, what about the other one? How many times does she have to use that one?” I asked.
“The Novolog is used whenever she eats or her glucose is too high.”
“Okay.” I paused and then continued “How long is she supposed to be on insulin?”
"The doctor didn't tell you?"
"Tell me what?"
Well unless a cure is found, she’ll be on insulin for the rest of her life.”
“But, don’t some people control it with pills?”
“That’s Type 2, your daughter has Type 1 Diabetes. She has to take insulin by injections or through an insulin pump. Right now there is no other method available to control her Diabetes.”
“Oh." I whispered as I stared down at the tiles on the floor. Perfect squares leading out of the room and into the hall. Earlier that day there must have been at least 3 doctors who asked, “Do you have any questions?” and I couldn’t think of any, not one. Now here I was pouring questions out of my mouth to the nurse, the same way the tiles poured into the hallway, one after the other. The nurse’s smile was gone. “The doctor will be here in the morning and I’m sure he can give you a better understanding of her condition.”
dn’t say anything.
“Are you okay” she asked.
“Yes, I’m fine.” I gave her a half smile and asked, “What do I have to do?”
“I’ve already wiped off this area of her arm with alcohol,” she pointed to the back of my daughter’s right arm. “Just pinch her skin up and insert the needle. Push the insulin in and count to seven before removing the needle.”
I looked at Lynda and told her not worry, it would only take a few seconds and then it would be over. She didn’t cry, wine or fidget. She was being a big girl. When the nurse left the room, I laid down on the bed with my daughter. She fell asleep within minutes. Her thin, four year old body looked so small. I got back up and tucked her in snugly. On the TV, Ella’s journey to find her Fairy Godmother continued. I sat in a chair and wrote down questions on the back of an envelope that I’d been carrying in my purse. There were a lot of questions. My knowledge of Juvenile Diabetes did not extend past the Mary Tyler Moore commercials that I’d seen on television and I couldn’t even remember what she was saying in them. I felt a little embarrassed about that. How could I have paid so little attention to something that affects so many children each year?
November 12, 2005
The doctor came early in the morning. He answered little of my questions. The questions he did not answer, he assured would be answered in diabetes management courses that I would be taking at the hospital. This didn’t make me feel any better. Besides, none of them could answer the most important question of all which was, “Why did this happen?” Juvenile Diabetes doesn’t even run in our family. I sat on the edge of the bed and sighed. According to the menu on Lynda’s bedside table, breakfast would be coming soon, which meant that I would have to check her glucose and give her insulin. I looked down at the floor. The tiles were made of two blue tones and they had a cream color lightly streaming through them. They looked like marble. Cold, hard marble that ended at the door, which was closed.
Classes started in the afternoon and there were three other families attending. I had a lot to learn. First off, I was told that Type 1 Diabetes is an autoimmune disease that causes the immune system to attack and destroy insulin-producing cells in the pancreas. Because she has Type 1 Diabetes, my daughter’s pancreas would not be able to produce any insulin at all. If she had Type 2, her pancreas would still produce some insulin, but not enough. There is no cure for either type.
In nutrition class I learned that the amount of sugar in her food would not determine how much insulin my daughter would receive. Just because a product is labeled, “Sugar Free,” doesn’t mean she can eat it without taking insulin. It’s about the carbohydrates and many sugar free foods still have “carbs.” When giving my daughter insulin, I was told to combine the amount of units for her carb. intake, with the amount of units for her correction dose, if her glucose was too high. If her blood glucose was too low, I would have to give her 15 grams of carbohydrates to bring it up to a normal level. If it was too low for her to take the 15 grams by eating or drinking, I was told to put cake icing in her cheeks. If her blood sugar was so low that she passed out, I would have to use a special injection that came in the Glucagon Emergency Kit.
When her blood sugar is extremely low, it’s called hypoglycemic. When extremely high, it’s called, hyperglycemic. I learned about Ketoacidosis, rapid-acting insulin and long-acting insulin. I was told that I would need to buy a scale and measuring cups to weigh and measure her food. I learned that every restaurant and fast food establishment is supposed to supply their guests with nutrition facts for the food they sell, if the person asks for it. I would later have to ask every place we ate out at, from Chucky Cheese’s to Applebee’s. The only place that labels their food is McDonalds. They label the wrappers and Kid’s meals.
I learned that schools, private or public would have to accommodate my daughter as they do any other child with a serious medical condition or disability. She is protected under the Disabilities Act; however, don’t mistake this as a reason for receiving Supplemental Security Benefits for a disability, because she would not be eligible for that.
November 13, 2005
On the 13th, I had a full day of classes. There was another nutrition class, and a class about sick days and how to treat ketones. I also had a couple of one-on-one sessions which I really liked. They were about simple things, like how to code her glucometer. The more I was educated, the better I felt. At the end of the day, the hospital gave me a multiple choice test on what I had learned. I did well.
November 14, 2005
Before my daughter was discharged, the hospital gave her a teddy bear named, Rufus, as a gift. He’s the official Diabetic Bear and he has patches sown on the spots where he gets his insulin shots. They also gave me a white binder. On the front cover it said, Managing Your Diabetes and on the first sheet of paper inside, there was a heading that read, “The Children’s Hospital of Philadelphia® Hope lives here.” I smiled and flipped through the book. It was full of instructions, information, charts and phone numbers. I felt confident. The hospital staff had done everything they needed to do to prepare us for our new life, and they did it within a matter of days. As I sat on the edge of the bed, waiting for her discharge papers, I looked down at the floor. The tiles had a baby blue and aquamarine mix of colors flowing through them. It looked kind of like cool blue water flowing toward the hallway, where white tiles met their edges, the same way white sand meets the waves of the Caribbean Sea. I felt relieved and thanked the staff repeatedly on the way out.
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