Merritt’s Story

Days leading up to Merritt’s type 1 diabetes diagnosis. Merritt didn’t feel good for many days and doctors didn’t want us to bring him to the clinic due to Covid being so new and elevated in the community. He had just learned to walk a couple months before but now was falling down and just walking like he didn’t know what he was doing. As a one year old it was hard to tell if his eating habits had changed because we were still trying to figure out what he liked. A few days before the diagnosis he was only wanting to drink milk and was pretty picky but he was also teething and had Rhinovirus. Looking back it makes sense now but he would wake up in the mornings with the biggest, wettest diapers and I just thought he needed a bigger size for nighttime. He had what we thought was a tummy bug because many kids at daycare also had a tummy bug. He never had a fever… his temperature was actually low at times. I think we saw a temperature of 95.9.

Two years ago today (November 17, 2020) plays so vividly in my head…. I only thought I was rushing home to meet the bus to get Emmett. TJ sent me a picture of him and Merritt, you could definitely tell Merritt did not feel good. His eyes were tired and his lips were purple. So TJ and I agreed it was time for him to be seen. TJ called the doctor that morning and they finally said bring him in but the appointment wasn’t until 3:30. While I was driving home to get Emmett off the bus. They ran labs where his blood sugar was 525 and wanted Merritt to be admitted to the hospital, they could call an ambulance or TJ could drive him to the hospital. TJ drove him, they skipped the Emergency room and got him straight to the ICU. He called me to pack us a bag so we had a little bit of stuff to stay the night. I took the fastest shower in my life, packed our bag, got a few things for Merritt, Emmett got his stuff from his room and we were on our way to Grandma and Grandpas where I thought I was dropping Emmett off for the night. By the time I had left from dropping Emmett off TJ had called again saying the Children’s hospital flight team was called and coming to get Merritt. That moment my heart sank and I just couldn’t get to him fast enough and it felt like the longest 20 minutes of my life. Again…. Covid…. The hospital was locked up except for the Emergency room doors where they had a staff member checking guests in. I told her I needed to get to my baby and I secretly wanted to run instead of waiting for her to get all the information. Once she got me a wristband and told me I could go I ran to the ICU where I walked in to find my one year olds lifeless body. HELPLESS. He looked so sick. He was fighting an invisible disease alone for who knows how long. The doctor was there to go over stuff with TJ and I about what was going on. The only thing I really remember from the conversation was that he was very sick, in Diabetic Ketoacidosis and we are lucky we brought him in when we did. I didn’t even know what that meant! In the moment I did not think this would be something he would have for the rest of his life! While waiting for the Children’s flight team, the nurses worked to get Merritt’s blood sugar down at a very slow rate. So slow that they called down to pharmacy a couple times to make sure they were running it at the correct rate. He was the youngest that Good Samaritan had ever seen. Once the flight team arrived we had to sign a paper saying it was okay that they took him and that we couldn’t go with him. It was hard to do but God knew it was the best for us. A short time into our drive the hospital called and said Merritt had landed, did great and was in his room. Driving there we had no idea we would be there the next six days. Those six days were so long and terrifying trying to get everything figured out. During our stay there we had so many emotions. There were a lot of highs and a lot of lows, literally! He had to eat an outrageous amount of carbs in order to be treated with insulin for his meals because the smallest dose they could give was .5 units. We usually had to play catch up after he had insulin because within an hour or so his blood sugars were in the tank. With him being one he didn’t understand why we were force feeding him sugar at random hours of the day and night. There were multiple times where I just sat holding him or sitting alone on the side of the bathtub in his room wondering how we were going to take him home and keep him alive. How were they trusting us to be an organ for my little boy that doesn’t even know what is going on and can’t tell us how he is feeling? It seemed like we would never be able to leave there. It was so much to learn. Checking blood sugars, counting carbs, checking for ketones in his blood and urine and treating for high blood sugars and meals with a syringe of insulin. I wasn’t even sure I wanted to leave the hospital. The only motivation for me was to get back home to Emmett so he knew we didn’t forget about him. We called him every night to talk to him so the boys could see each other. That was a blessing for all of us! Now we have gone from not knowing how we were going to take care of our little boy who had an A1C of 10.7 to not remembering life without diabetes and him surviving and thriving with an A1C of 6.7. He is absolutely one of the strongest and bravest kid I have ever met. We wouldn’t trade him for the world and we try to give him the best outcome of life. Now is the time to help him learn good decisions and hope that he will continue making good decisions for himself as he grows. 

Two years with Type 1 Diabetes has been hard, it doesn’t stop for anything, alarms during the day and night, treating highs and treating lows. The dexcom does make it a little easier to not be so crazy about watching him 24/7. Finding the correct dosing is always a chore once we thinking we have it figured out he grows and everything changes again. With the dexcom and his pump it has the ability to act as an external pancreas. Thank goodness for all the technology they have come up with to make diabetes management easier. NOT EASY just easier! We are so thankful to have such an amazing support system. We were so nervous to take him home and then we had to bring in so many others to learn how to take care of him. They have all stepped up to the plate and hit it out of the park! Without all the help we would not be where we are today. It is so consuming but totally worth it to have our sweet (literally) boy here with us!

A lot of times I find myself questioning WHY?? Why did this happen? Why to my baby? Why our family? I have also found peace and comfort in knowing that he is doing so much better and that he will never know anything but a life with diabetes and hopefully that will help him to keep his numbers under control and take good care of himself!