Our Story - How our world was turned upside down in 24 hours
"Don't go home. Don't get clothes. Go straight to the ER, now." - Our pediatrician
What started out as a normal Tuesday, ended up with life changing diagnosis for Luke and our entire family. Here’s how it went ….

On Monday, August 3rd, Keith and I both got up and went to work, leaving our 3 kids asleep at home. I checked in with them mid morning, and stopped in at lunch time to make sure all was well. The teenagers said they were fine and Luke came to me and said “mom, I kind of have a belly ache, I feel like I might throw up”. While at home, I made sure he drank something, told him to lay on the couch, take it easy and I’d be back home in under 2 hours. Its summer after all, and their diet consists of more than normal junk food.

That afternoon when I got home, Luke seemed more energetic and more like himself. He asked me to go on a bike ride, and we did. It lasted exactly 2 minutes. He looked over at me and he said, “I’m tired, lets go home”. An hour later, he threw up. I thought to myself, “Great! Stomach virus in the house”. I gave him some fluids, put him to bed, and hoped the rest of us stayed well. I went to bed and Keith slept on the couch in case Luke needed something.

Tuesday morning, I woke up and Keith said Luke had been up a few times during the night. He was finally asleep when I saw him. I called my boss at 8:30 and said I wasn’t coming in, not even to pick up the laptop, because I thought Luke had a virus and I wanted to keep an eye on him. This is not my norm, because my husband was working from home that day, and there was no reason for me not to leave for a bit. BUT something inside of me said to stay home.

Luke was now in our bed, and I laid by him for hours. I watched him try to sleep. It was fiful and filled with moans. I offered fluids (juice, water, gatorade) making sure I kept track of how much he was taking in and how much his output was. I documented it all. As the morning went on, his breathing became labored, and he just looked sick. I went to talk to my husband and I said “if I didn’t know better, I’d say he’s lost 10 pounds overnight. He looks just like my dad did before he died” (my dad had died almost a decade before from cancer, and the way Luke was holding his head up and his eyes closed, was eeriely reminscent of this.)

I called the pediatrician an appointment was set for an hour later. In the next hour, Luke complained of being dizzy, said he couldn’t walk, and just fell to the ground. We carried him to the car. Was I worried? Yes. Was I panicked? No. I knew he was sick. Was it dehydration from a stomach bug? (didnt really make sense because of input and output), was it covid? Either way, I figured some fluids and some rest and we’d be back on track.

At the pediatrician, only one of us was allowed in due to Covid restrictions. My husband called from inside and said the doctor agreed that he was dehydrated, and she did not think it was Covid. Sigh of relief there! There would be orders for fluids at our local hospital, but she wanted to do a blood sugar check to be sure it was nothing else. She was concerned because his intake and output did not add up. Finger stick result was a blood glucose of 470!

I got that phone call sitting in the car in the parking lot. There was shock, and tears and admiteddly some hysteria. Keith calmly told me we had orders to go to Children’s Hospital and we were not to stop at home. There was no need for an ambulance, but the ER had been notified, and we needed to go NOW. To this day, this memory gives me chills. Words you never want to hear. My husband held our son and I drove. I called our friend who is an RN at Chidren’s. Thankfullly she was working and helped us navigate the buiding and the process (16 years of parenting and we’d only been there one time!)

The RN in me went to the dark spot in my mind … “DKA (diabetic ketoacidosis)… brain swelling … coma.. death”. The mom in me was reduced to tears.

Upon arrival at Children’s Hosptial, we were Immedialty brought to a room in the ER and Luke was hooked up to 2 IV’s. He was definitely in DKA. He was started on an insulin drip and fluids. And all the while my boy just said “don’t take my arms! I can’t bend them”. Blood glucose on admit was 679. For reference, the normal range at our hospital is 65-100.

The ER doctor pulled us aside and began to tell us the what if’s. I immediatly stopped her. I was likely rude. I point blank asked: “Did we catch the DKA in time? Will there be brain damage?” She assured us more than likely no, but we’d need to wait and see. IShe asked if she could see a picture of what he “usually looks like”. I showed her one from less than 48 hours prior, and she was shocked. She would not have guessed that was the same kid. It all spiraled downhill so quickly.

It was official that our seemingly healthy child was a Type 1 diabetic. 5 /5 antibody tests came back positive. There was no denying this, no hoping a mistake had been made. He has an autoimmune disease. His body attacked itself, specifically his pancreas, and his body no longer makes insulin. Without insulin, the body cannot get glucose to the cells and the body starves. What I initially thought was a stomach virus, and treated with sugary drinks, really did more harm than good. This haunted me for a long time. As a Mom and a nurse, HOW did I miss all of the classic symptoms? Excessive hunger, thirst, and urniation. I know why. Because it was summer in Louisiana, and we were home, quarantined, and Luke is an active boy. From swimming to biking to playing with neighborhood friends …. he did not stop. So, of course he was hungry, and thirsty. This did not seem extreme.

Once we moved out of PICU and Luke became more aware of the situation, there were obvious quesitons from him. “When we can stop the finger sticks and shots?”. We looked into those big blue eyes and very matter of factly told him “Never. You need these shots to keep you alive. If you don’t take the insulin, you will die”.

Did I ever expect to say this to my 7 year old? How this was said without tears, I have no idea, but at that moment, he had to hear it and we had to be strong. Now, this may seem harsh, but this was our new reality. I knew we needed to be matter of fact. We did not want to lie to Luke or give him false hope that this was short term.

Over the next few days, we received a crash course in carb couting, carb to insulin rations for dosing, continuous blood glucose monitoring and insulin pumps. Can I just say a WHOLE new language? Thank you Caroline! She was our diabetes educator and she is AMAZING! We were discharged home 3 days later with a health(ier) little boy, ALOT of fear, and that feeling you have when you bring a newborn baby home ….. Now what??? Truth be told, midnight of the first night home … Luke refused to drink, we told him we’d have to go back to ER and we called the Endo at 2 am.

The worry never ends. Its a rollercoaster of blood sugars (his) and emotions (ours). He’s 8 now and I’m already wondering about his college years …. Each day WE are his pancreas. WE calculate dosages and make decisions that keep him healthy and alive.

In the beginning, our first few weeks home from the hospital were not easy. Sleepless nights, constant worry, 3 am finger sticks, and the never ending “Is he OK?” “What if …”

The answer is, YES!, He is ok. He is more than ok. He is excelling. He’s accepted his diagnosis with a fearlessness, understanding, and acceptance far sooner than we expected it. Sure, he’s had his moments, but who wouldn’t? He has proven to us and his sister and brother that when life throws you a curveball, you knock it out the park and keep on playing. He is our WARRIOR!