Discovering Type 1 (Juvenile on-set) diabetes in my 15 month old baby
Our son is 6 years old. He is a happy, healthy baby boy who does all the things children his age should do, (and a few things he shouldn't!)
In March of 2011, he was diagnosed with Type 1 diabetes, also called juvenile onset diabetes. This means that his body simply stopped producing insulin. Unlike Type 2 diabetes, which most of us are more familiar with, it will never get better and he will always need insulin doses to survive. I want to share how we discovered this because we were told by the physicians that many children die at the first onset because parents don't know the symptoms.
Discovering that he had diabetes unfortunately did not happen at a routine doctor's visit. He had a cold that was causing him some of the normal symptoms, runny nose, coughing and somewhat raspy breathing. He had been prescribed breathing treatments and some medicines. He seemed to be responding quite well to them and looked like he was getting better.
Then on a Saturday afternoon, my wife and I took him to Grandma and Grandpa's house while we went to the local home improvement store to pick up some things. We were gone about a half hour when Grandma called and said that Gage, our little boy, seemed to be vomiting quite a bit. So we hurried back to the house. When we got there, we noticed that his breathing seemed a bit more labored and his lips almost looked a little bluish. He still seemed relatively ok though running around the house. In a matter of minutes, he threw up again. We took him home and grandma and grandpa kept the other kids for us.
At home, I gave him a bath while mommy cleaned up his stuff. I noticed that now his little fingertips seemed a bit bluish and all he wanted to do was fuss and drink his bathwater. I got him out and dressed him warmly, thinking that this might help with his color. He started vomiting all the water he drank. So we gave him some pedialyte. Same response, more vomiting. At this point, he seemed to have no energy. He laid on the floor and kind of softly fussed. I had to hide my drinking glass though because whenever he saw it, he would go into a frenzy trying to get it. The first time I let him, he drank like a person dying of thirst. Then it came right back out. We finally decided that we needed to go to the emergency room.
Saturday night, about 9:15 pm, we were admitted into the emergency room. We explained all the symptoms to the physician. They initially suspected pneumonia, so Gage was x-rayed to check his lungs. Lungs looked good. So they decided to do some blood work. I had to hold his little body down while he cried as they dug and dug trying to find a good vein. He was dehydrated so his little veins had shrank even further. We couldn't give him much to drink because he would vomit. I vividly remembered looking into his little face as he was crying and his tongue looked swollen as he probed it around his dry mouth trying to find moisture. As I was holding him down and observing this, the nurses tried to insert a needle to start an I.V. drip. They probed the inside of both arms, outsides of both hands, and both feet. I was beside myself in agony as I watched and knew that I could do nothing but hold him down and pray they find a good vein soon. They eventually did. We told the doctor about how thirsty he was at home, and we saw his expression change. He excused himself to check something, then returned a few minutes later. He told us that Gage had Type 1 diabetes and that his blood sugar was about 690. He explained that when the body cannot metabolize sugar because of a lack of insulin, it will attempt to flush it out. This explained the dehydration. The next problem is that the body must have energy so it begins to break down fat. The breakdown process releases a by-product called ketones. The ketones enter the blood stream and creates a situation called ketoacidosis. The organs begin to fail because this 'acid' and the overabundance of sugar causes the blood to thicken. This means less oxygen to the lungs and weak muscles, which explained the labored breathing and the blue color at the extremities. The body also starts to dump into the stomach, which explained the vomiting. The doctor then informed us the Gage will always be insulin dependant and we will have to monitor everything he eats. We were told that an emergency helicopter is coming for him to take him to Riley Childrens Hospital in Indianapolis. It was about midnight.
All this information hit us like a ton of bricks. Mommy instantly cried as she held her baby. We both asked the doctor how this could be when he was fine just a month ago at his doctor's visit. They explained that although genetics play into it a little, more than anything it is an immunity issue. The body attacks the islet cells that produce the insulin from the pancreas. Once the cells are dead, they don't regrow.
The doctor and nurses tried to encourage us that it will be okay and that many people live a very successful life even with Type 1 diabetes. I tried to console my wife as well. I told her that it will be okay and we can do this. The paramedics from the childrens hospital arrived and began the process of transferring Gage onto their equipment to transport him on the helicopter. At this point, I couldn't stop the tears as I watched them begin the process of taking my baby boy away. They reassured us that most children sleep through the ride because of the rhythm of the helicopter. They kindly took our cellphone numbers and told us that they would call as soon as they landed. As we watched them roll our confused and crying baby out the door, we held each other and just let the tears fall. As we walked out of the room to leave the hospital, I realized that a lot of the emergency room staff had gathered and were watching us. I felt uncomfortable even though I knew they didn't mean anything by it. I slipped my arm tightly around my wife and half walked, half carried her out to our vehicle. It was about 2:30 am Sunday morning.
We went home and packed clothing in suitcases, gave a quick call to Grandma, and began the 3 1/2 hour drive to Indianapolis. The sky was clear with a bright moon, and even though I knew they were long gone, I couldn't help but glance up to see if I could see a helicopter.
About 6:00 am Sunday morning, we finally reunited with Gage in the children's' hospital. The staff at the hospital was absolutely wonderful. He had multiple people checking and monitoring every aspect of his health. When we walked into the room, he was being rocked by a nurse. He had clearly tolerated her but was very excited to see mom and dad. We were happy to see him too, but seeing all these leads and IV's attached to him was scary.
The training started the very next day. The hospital staff met with us and explained everything about how this changed his life and how we treat it. We were not happy about the thought of giving our child daily shots. Nobody wants to poke a baby, let alone doing it 4 times a day. Then there was the calculations. At every check of his blood sugar, at each meal, a corrective dose has to be calculated based on his sugar levels. Then, every carb consumed during his meal has to be counted, then another calculation performed to find his food does. Then the corrective dose and the food dose are added together. That number is then rounded to determine how much insulin to give him. The doctors and nurses said we would be ready to go in 2 days. We weren't so sure.
When the day came to leave, we were very worried about all the ways we could screw this up. A mistake could be catastophic. The staff assured us that in 6 weeks, we would be pro's at this. We were not convinced. But we knew that we had no choice. So we studied and tested each other and found strength as we began to grasp all the information. It was a long drive home.
It's been about 2 years now. They were right. We are in a routine, and he doesn't even cry when we poke him. We've gotten pretty good at it. The hardest part is telling a 3 year old that he needs to eat all of his food to get the carbs he needs. But he is healthy and strong. Seeing him, a person would never know unless they were told about his situation. As his parents, we are well aware of how close we came to losing him, and we are glad we didn't!
Thank you to all the doctors and nurses of Riley's Childrens Hospital!