My son Benjamin was diagnosed with Type 1 Diabetes last Valentine’s Day. He was five years old. That first night in the hospital I knew with absolute certainty that I would stop working. I wanted Benjamin to have his best life. I knew that I would be the best person to closely monitor his medication and the progression of the disease. I also knew that the next school year would be a challenge as it would be his first year to be at school all day. The following is an email I sent to the many friends and family who supported us during the rough first month when we were learning how to best care for Benjamin.
So many people have asked me how we knew Benjamin was sick on Valentine’s Day. We’ve also had a lot of people express their support and ask how our little B is doing. This seemed like a good way to get the information out to a large group of you at one time.
During the month of January Mike and I were noticing Benjamin’s increasingly erratic behavior. B’s a quirky guy so at first we thought he was reacting to some disruptions in his normal schedule. The last week before Valentine’s Day I was not sure what to do with Benjamin. He wasn’t eating anything for breakfast. He was sleeping late. He was screaming in frustration trying to put his socks on. Mike and I were at our wits end trying to figure out what was going on. As the week wore on we noticed Benjamin was getting up a lot to go to the bathroom in the night something that was very unusual for him. He also wet the bed several nights in a row something he’d never done before. We cut off his evening juice and water to try to solve the problem. He was so thirsty. In the evening he’d get into the Dixie Cups and drink water over and over. Benjamin was also feeling “yucky” in his stomach. I figured he was fighting a virus.
On Sunday Mike and I were trying to do our taxes. We’d been working on it all morning. Benjamin was driving me crazy asking for juice. Normally I water down juice a lot when I give it to the boys. B started asking for it straight. Then he begged for berry-flavored juice rather then apple. I was trying to figure out taxes and he wouldn’t let me work. He just kept asking for more juice. At about 4:15 Mike called me into the kitchen and said, “Maybe we should check B’s blood sugar”. As soon as he said it everything clicked for me and I knew he was right. Mike is a Type 1 diabetic. He was diagnosed when he was 12. Because of this we know a little more then most people about the signs of diabetes. It is extremely rare for a father and son to be diagnosed with Type 1. Regardless we’ve always had it in the back of our minds to watch the boys.
I had to hold Benjamin down while Mike pricked his finger and let the blood wick into his glucometer. As soon as the reading 557 popped up I felt as though I’d been punched in the stomach. Mike and I looked at each other. We knew what it meant. We knew we needed to get B to the ER quickly. A normal body processes sugar in the body using insulin and keeps blood sugar levels averaging about 100-125.
We took Benjamin to Legacy Salmon Creek hospital. It’s close to our house and has a pediatric ER with physicians trained in pediatric emergency medicine. We knew B would need specialized care. Of course in the back of my mind I was still hoping that for some reason this wouldn’t mean what we thought it meant. At Salmon Creek we were seen immediately. The risk for Benjamin was coma and then death. He was ketoacidic. His body was not producing insulin to break down sugar. The sugar was building up but his body couldn’t use it. His liver was trying to break down fat for energy. When this happened he was building up keto acids as a by-product. Benjamin was also dehydrating. His body temperature was high. It was miserable for him.
Benjamin was immediately put on an IV. Wire leads were placed at five points on his body measuring his heart and lung function. One of the dangers was his blood gas level. The wrong treatment for ketoacidosis can create bubbles in his blood stream. The doctor, in consult with the pediatric endocrinologist at Legacy Emanuel Children’s Hospital checked his labs and tried to decide if B would be place in the ICU for further treatment. Finally they decided we’d caught his high blood sugar in time and that they would transport him to the Children’s Hospital. He went straight to Emanuel. I remember as we were preparing him to be moved the nurse looked at me and said, “This is a Valentine’s Day you will never forget”.
At Emanuel we had a nightmarish night. B was exhausted. We were exhausted. I sent Mike home for a little sleep. Benjamin was poked almost every hour. Five vials of blood were drawn. He had two IV ports. He sobbed most of the night until I thought it wouldn’t end. He threw up. At one point he looked up at me and said, “I’m in a world of pokes”. It became so bad that he would scream when the nurse came through the door. I hate to remember that first night. All I could do was crawl into bed with him and hold him. He begged me to take him home. He begged me to make it all stop. It was horrible.
The next day I went home for a short break and Mike stayed with B. I took the opportunity to fall apart completely. Thank heavens for my wonderful friend Tracy. I called her after a few hours at home. I couldn’t sleep. I couldn’t stop throwing up. I couldn’t stop crying. She came right over. She sat me up in a comfy chair and covered me with a blanket. She talked to me. She cried with me. I’m not sure what I would have done without her.
I was able to go back after about four hours at home. Mike and I met with the team of specialists. Benjamin indeed has Type 1 diabetes. They told us it’s very rare for a father and son to both have the disease. Type 1 Diabetes is an autoimmune disease. The cause of the disease is not known. They do believe that B’s body was predisposed to be triggered into this disease. The trigger is not known but some studies point to a virus other to toxins. We just don’t know. His body is targeting and destroying the insulin producing cells in his pancreas. The doctor estimates that because he is so young Benjamin’s disease is fairly aggressive. He estimates all of his insulin producing cells will be destroyed within the next six to nine months. B is now insulin dependent.
If you ask Benjamin he will tell you he has “Diavetes” with a long veee sound in the middle. 🙂 He’ll also tell you what we tell him, that he is not sick. His body is special and needs insulin. If he doesn’t get insulin then he will be sick.
We are home now. We record Benjamin’s blood sugar using a lancet to draw blood at least five times a day including 2:00 am. Currently Benjamin receives four injections per day of insulin. The amount varies based in the amount of carbs he eats at each meal and his blood sugar level. After each meal he gets a short acting insulin called Humalog. At night before bed he gets long acting insulin called Lantus. Every day I call the Children’s Diabetes Center and give them 24 hours of blood sugars, carbs eaten and insulin given. It’s a lot of pokes for a little guy and he handles it better then I think I would. He’s got bruises on his fingers and on his arms. He’s afraid to try alternate sites like his leg or arm for injections and blood sugar testing. We are trying to let him choose his sites to give him some sense of control. We are also teaching him to read labels and count carbs.
We are all grieving right now in our own way. I find myself in tears at unexpected moments. When I first went to our pharmacy to pick up B’s insulin and syringes I was surprised to find myself in tears. Mike and I try to talk to each other and help each other through the sad moments. We are also working very hard to move forward. Mike knows what it’s like to live with Type 1 diabetes. We know the toll it takes on a body and how it can become limiting. We are determined to help make B’s life as wonderful as we can and give him the sense he can do anything he wants to.
Thank you all for your wonderful support. As we received kind well wishes from family and friends. I was able to see email and FB comments on my phone and tell B another person was sending him love. It really meant a lot to all of us. Thanks to my parents for driving home to watch Jakey. A special thanks to my siblings in the area who drove their families in to see Benjamin. We really feel that Benjamin made a lot of improvement when he saw Payton and Paige, Preston and Dylan.
Benjamin made up a “song” yesterday. It went something like this: “Diaveetes isn’t so baaaaaad. Diaveetes isn’t so baaaad. Diveetes isn’t sooooo good. I guess it’s just mediummmmm.”