Today marks one year since my youngest son’s diagnosis of Type 1 Diabetes.
365 days ago I knew nothing about this disease and how dangerous it really is, so I feel it is important to share our story.
Last summer Cal started to request sippy cups filled with any liquid he could get. He suddenly wasn’t picky if I would just give him water. It was July/August and I just thought the heat was making him thirsty. His diapers were soaking through in just an hour. I bought the bigger size diapers thinking he was just growing out of them. He would complain of stomach aches and say he was going to throw up and look like he was going to pass out. I thought he just had a bug that his siblings had passed on. He started to look very skinny and pale, and his energy level dropped considerably. This is when I got worried.
I spent a weekend worrying and debating taking him into urgent care. I waited until Monday (ugh, in hindsight this makes me ill tho think about) and called our family doc. I listed off his symptoms and they made us an appointment for Friday. I knew that 5 days was too long to wait. Something was very wrong with my two year old baby boy. In the back of my head I knew that excessive thirst and urination were associated with diabetes, but I had never heard of a two year old being diagnosed. I knew nothing about Type 1 and the base of my knowledge was on Type 2. My mom had a blood glucose meter and I asked to borrow it that afternoon while we were over at her house. It read “HI check for ketones.” She looked at me confused and said she had never seen that before. She tested her blood and it read a normal number. I called my doc and they said “I am so sorry, please go to the ER immediately!” I was scared. If it was “just diabetes” then why is this an emergency.
I was clueless. I thought, well maybe it is some other disease that raises your blood glucose levels. A million different terrifying scenarios went through my mind. Luckily the hospital was just up the road, so I didn’t have much time to come up with ridiculous self-diagnosis before they rushed us back. They tested his blood and it was 646. It should not be above 180, if we had waited much longer, he could have ended up in a coma. My heart sank. They immediately needed to start an iv which is very hard to do on a skinny, scared two-year old boy. It took several tries and over the course of the next few days they would have attempted 6 IVs with only three being successful. The time they decided to try the papoose board instead of have me hold him was the worst. His scared eyes reaching out for me as he screamed, and I was just trying to put on a brave face for as long as I could.
Time moved so quickly, yet stood still at the same time. My husband was there with us and asked many questions before one doctor finally said the words, Type 1 Diabetes. I immediately felt responsible. What had I done to cause this? He wasn’t overweight, we ate fairly healthy. We had no one in our family with Type One. Again, I was clueless. They were running some tests on his blood and urine and there was mention of DKA, but we were still confused. All the staff left as we sat on the bed with our boy and all three of us had tears streaming down our face. This was a life-changing moment for all of us. I wasn’t sure what this meant for his future or how this would limit his activities. I was told he would be dependent on insulin shots or a pump for the rest of his life, but would lead a “fairly normal life” otherwise, and that was all I had to go on at this point. It was better than some scenarios I had made up in my head, but it was still heavy and terrifying.
We got the results back and found out he was in fact in DKA, Diabetic Ketoacidosis. His blood glucose had been high and since the glucose was not getting into his cells (because his pancreas was no longer producing insulin that is required to get glucose into your cells) his body was burning fat which produces ketones. This meant his blood was becoming acidic and threatened the health of other organs.
We were wheeled up to the pediatric unit, and as I lay on the bed holding my son they pushed us through the double doors and I saw a hallway of rooms. It hit me that they were full of children. Very ill children. I could not stop crying as I felt so lucky. We were going to get treatment, education, and leave. Our diagnosis was NOT terminal. It was chronic. It was going to be a life-long battle. But it could be managed.
We spent that night trying to keep our boy comfortable with finger pokes every 30 minutes and IV changes and blood draws every few hours. We did not sleep.
The following day was filled with education and news that we would need to travel 250 miles to Denver to the Barbara Davis Center for Childhood Diabetes to receive training and care. This was just the beginning of a year of unique challenges.
To be continued…
**Please educate yourself on the symptoms of Type 1 Diabetes. You can be diagnosed at any age. If not caught early enough, it can be deadly. If our story can help just one person, it is worth sharing!