Nicole G. McLemore RN, BSN-ONC contributed the following article. It’s her personal perspective and reflection of her journey through diabetes, both as a mother and a nurse.
If I asked you to wear pink during October, it probably would not take you very long to know pink is for breast cancer awareness. But, what if I asked you to wear blue during the month of November? You may not know that blue is for diabetes awareness. Diabetes tends to get less attention.
As nurses, there is not much focus during our education on diabetes, specifically type one diabetes. As a hospital registered nurse, I worked primarily with adults with type two diabetes. With these patients, I knew they had a diabetic or heart healthy diet and many had complications from their diabetes mostly due to poor care. I am by no means an expert, but I would discuss with them how their diabetes insulin and medication management would be different due to their hospital admission.
I very seldom had a patient with type one diabetes and if I did, their management diet-wise, was not much different from that of a type two. I did not know to do any different. My patients with type one diabetes never corrected me when I told them they were on a heart healthy diet. How is it, that we can be taught so much during nursing school, but at the same time, not taught enough on two diseases with a common name, yet that are completely different?
How prevalent is diabetes?
According to the JDRF, there are 1.25 million people with type one diabetes — 200,000 of these are under 20 years old. There are 40,000 people diagnosed every year, yet still a lot of misinformation about diabetes. For example, people think of juvenile diabetes as “the bad kind” or “the kind only kids get.” Many under the age of 40 are misdiagnosed as having type two diabetes because of this thinking. For this reason, more and more diabetics are using the term type one diabetes as opposed to juvenile diabetes.
Our family’s story with diabetes
February 10, 2017 is a day I will never forget. The day our lives changed forever. My 2-year-old daughter’s carefree childhood was taken away and I was confronted with needing to learn about type one diabetes. As a nurse, people assume you know everything about every disease. In reality, we have a focus. Mine is orthopedics. As a mom, I was about to become an expert in diabetes.
Many times there is a trigger that brings type one diabetes to the surface. It could be a cold or a virus or even an immunization. There is usually a trigger. Does that mean these caused the diabetes? Absolutely not! The person already had it in their genetic makeup and whatever the reason, the gene was “activated.”
So what was my daughter Raegan’s trigger? Right before winter break, my oldest was diagnosed with an upper respiratory infection she acquired at preschool. Well, you all know what happens when one kid gets sick. My infant was next: diagnosed with RSV (respiratory syncytial virus) and hospitalized for eight days. Raegan was diagnosed with croup and put on a steroid.
As a medical professional, we know that steroids can temporarily mimic the symptoms of diabetes because blood sugars rise and the individual has the same symptoms as a person with high blood glucose. My mom was helping take care of the two children at home while my husband and I went back and forth between the house and the pediatric intensive care unit with our newborn. I remember coming home and Raegan’s sippy cup was always empty despite it being filled minutes prior. Her diapers were so full, urine would leak onto the floor despite the fact that her diaper had been changed not long before. I knew this was due to the steroid she was on and her croup was improving so I figured when we stopped the medication, the symptoms would subside.
Fast forward to a little over a month later and the symptoms had decreased but still had not completely disappeared. Raegan also had a yeast infection that we could not get rid of. I texted one of my good friends who is a nephrologist and asked him if he could think of anything else it could be other than diabetes. We couldn’t think of anything else but knew a simple blood test would hopefully put my concerns at ease.
I called our pediatrician the next morning and they said because she was so young, diabetes was highly unlikely but of course they would see her — especially with the yeast infection.
They asked if I felt it was an emergency. That is where the mom in me took over the nurse in me. As a nurse, I knew what it was, but I wanted so badly to be wrong. The mom in me did not want to believe it. We waited until the end of the week. There is so much that could have gone wrong in those days we waited and we are so grateful that nothing did.
We went to the pediatrician where they weighed my daughter and we found she had lost ten ounces since her last appointment in December. Ten ounces may not seem like a lot, but for a little girl, it was enough.
They checked her blood sugar and her blood glucose was 263.
Tears started to well up.
It was 1500 and she hadn’t eaten since 12:00.
I asked if we could wash her hands and check again. The number came back pretty much the same. She was not in diabetic ketoacidosis, thank goodness, so we ran home and packed a bag knowing we were going to be admitted to the hospital.
In the hospital we learned just how different our life would be from now on. Our child was going to be MDI (multiple daily injections), we would have to explain to our 2-year-old that she was going to get at least four shots a day and her finger poked at least six times per day.
As a nurse, I could give insulin and check blood glucose no problem, but as a parent, seeing your child cry because her long acting insulin stung night after night, is completely different.
In nursing school, there are so many things we are taught and working in the hospital I took care of patients with so many ailments, but I never went home with them. I never knew the struggles that they dealt with on a daily basis. I now had that personal connection. It not only made my worlds collide but made me a better nurse. A nurse who could empathize because I dealt with the daily struggles now and I knew on a personal level what they were going through.
Having a chronic illness is hard and there can be a lot of misinformation. We were told 90% of diabetes is not genetic and our other two daughters had a 5% chance of acquiring the autoimmune disorder.
My husband and I did not know how false this information was.
Not once, but twice
January 16, 2018. The day we almost lost our 1-year-old. Knowing all the symptoms, how could my husband and I miss hers?
Well, that’s an easy question to answer: she didn’t show any. There was no excessive thirst, excessive urination, irritability, or a yeast infection. Looking at pictures, she did not appear to have lost weight.
Annabelle randomly began to throw up at 2000 on January 15, 2018.
Every time she drank, she would vomit.
I called the pediatrician in the morning and was told there was a gastrointestinal bug going around that fit that course and it should be dissolving soon. Later, they called back to see how she was doing. Her breathing was labored but she is also asthmatic so they said to do a nebulizer treatment and bring her in for the 13:00 appointment.
My husband and I discussed if we should check her blood glucose but decided against it because she had not been showing prior symptoms and the chance of her developing diabetes was low.
Around 12:00 I went to breastfeed my little girl and she struggled. I looked down at her and her eyes had caved in. We quickly rushed to the emergency room where it they weighed her. She had lost two pounds in a little more than twelve hours. This amount of weight loss happens in DKA.
Immediately I told them her sister was a type one diabetic and to check her blood sugar. It was over 500. She was in severe DKA and we almost lost her.
We then met an amazing endocrinologist who told us we were grossly misinformed by the prior endocrinologist whom we had switched from six months prior. Annabelle had at least a 20% chance of developing type one diabetes and there is a strong possibility we have a genetic disposition due to the ages our children were diagnosed. We did some digging, and sure enough there was a genetic link to type one diabetes in our family. We then decided to have our oldest checked for the antibodies. She is currently positive for one out of the four so is being closely monitored.
From a nurse’s perspective
So what have I learned being on both sides of an autoimmune disease? I learned that as nurses, we fail our patients without even realizing it. We do not advocate for them or really listen to not just the patients, but their families as well. I was always taught that you need to look at symptoms, not just the numbers or lab values.
Six months after Raegan was diagnosed with type one diabetes, I noticed there was something else going on. She was gaining one pound per month and her growth had stunted. I voiced my concerns to the nurse practitioner for over six months and she told me it was just insulin and now my child was considered obese.
We had our next visit with her endocrinologist who agreed that something might be wrong but wanted us to try and increase her levels of physical activity. Three months later, my child had now gained a total of 12 pounds in a year. Labs were ordered and Raegan was diagnosed with celiac disease and hypothyroidism. Why had it taken so long?
I recently got into an argument with a nurse because Raegan has hypothyroid and I can tell when her medication needs adjusting. The nurse told me that it was my parenting — not her thyroid that was making her exhibit extreme irritability. In Raegan’s chart it says she does better when her thyroid levels are on the lower end of the normal range and has behavioral problems when they are on the higher end of the range.
These are two examples that we as nurses really need to think long and hard about. Why should a child suffer and why would you ignore a parents valid concerns. I know as a nurse, we tend to look into things more than the average person, but we also notice things sooner than others because of this.
When caring for a diabetic child there are so many things that don’t fit the textbook examples. Did you know that you can go into DKA with normal blood sugars during an illness? A gastrointestinal bug causes low blood sugars in younger children and they are often admitted because they need fluids with dextrose. On the other hand, a respiratory virus causes high blood sugars.
As a healthcare professional, but also a parent, the most important advice I can give is to educate yourself. Pursuing continuing education and webinars has furthered my education as well as furthered my ability to help educate my husband and family members. For example, now my sister knows how our girls act when their sugars are low or high and the symptoms can vary from person to person. Both of my girls act differently. One of my girls does not need any insulin for apples, while the other needs double the amount.
If you are caring for an adult, they may have lived with type one diabetes for over 20 years. They have so much knowledge and there is so much you can learn from them. Take the time to talk with them. Find out how harshly they may have been treated because they gave themselves an injection in the middle of the restaurant, been told they cannot eat something because they are diabetic (type one diabetics can eat any foods they desire), or that essential oils can cure them. You will learn you will become a better nurse because you are educating yourself in addition to the textbook examples and really getting to know your patients and their families.
Ready to learn more about treating patients with diabetes? Find additional diabetes courses and resources for nurses within the Elite Nursing Passport.