My mother in law had told me that she cleaned the floor in my 11 year old son’s bathroom because it was really very sticky. But my mother in law rewashes my tupperwares because they are not clean enough and takes steel wool to my pots and pans, so I took this to be yet another of the many aspersions she cast on my housekeeping standards. Young boys splatter, I thought, get used to it. But in retrospect this was one of the early signs we could have picked up on if we were even remotely attuned to the signs of diabetes – probably because no one in either of our families had ever had the disease and it was just not part of our medical vocabulary. This incident was an early milestone in our journey toward DKA (Diabetic KetoAcidosis), the emergency room, and living with diabetes.
The progression happened over a few months with a series of occurrences that should have been a noticeable pattern – complaints of fatigue, or as we saw it trying to get out of soccer practice: low energy, not participating as much in class or even falling asleep. A teacher called our attention to this, but we couldn’t think of anything out of the way that would have caused concern other than a sleepover that may have resulted in sleep deficit, and well, adolescence in general.
The week that things came to a head started with us being out of town for a night and our son staying with his grandmother. She told us he was not feeling well and didn’t want to go to soccer practice on Sunday, but we thought he was just working his nanny and should go. The week proceeded with additional complaints of feeling off, but nothing earth shattering. I took him on Wednesday to my workplace for “bring your kids to work day”. He said he was very tired and my solution to this was to feed him the kids meals that the company had prepared – tacos and donuts, I think it was – and soda which he never was allowed, to give him a jolt of carbs. Not exactly what the doctor ordered for someone in the early stages of diabetes. That next day I took him to soccer practice, but soon after got a call from him saying he had just thrown up and needed me to pick him up. When I got there the coach told me he was not in good shape, had been nauseous and was complaining of an earache. I assumed he had an ear infection based on what I heard and took him immediately to a local urgent care clinic. They agreed about the ear infection and prescribed antibiotics. This was a fairly normal thing for him. I thought in two days he would be fine.
But he was not fine. Between Thursday and the following Monday he continued to have ear pain and was visibly losing weight. So on Monday we were able to get him into his normal doctor’s office, but not to see his regular pediatrician, who happened to be out. The doctor who saw him said that the antibiotic was not working and prescribed a stronger antibiotic with instructions for us to give it three days to show results. By Tuesday, the very next day, he seemed to be really deteriorating. He was looking skeletal, and after weighing him, I realized he was down 15 pounds in just 4 days. Knowing something about weight loss, I realized this almost certainly was water. He was extremely weak and I began to tell him that I might take him to the ER, but wanted to avoid it if I could. He was having a hard time keeping food or liquid down and seemed absolutely exhausted. My husband wasn’t home, but I told him I really thought Kaelan needed to be on an IV because I was concerned that he was getting dehydrated. He thought we should wait for the 3 days the doctor had told us about before he was seen again, but I was getting really spooked. I talked to the nurse at his pediatrician’s office and told her that he needed to be seen immediately. I actually told her that I felt like I was watching him die. At that she said “listen hon, if you feel like that, take him to the emergency room”. That took a weight off me, because it was permission to ignore the doctor! Why did I need permission? I have no idea, but that instinct to obey medical authorities runs deep and is something I can now say that I am totally over.
By Tuesday afternoon Kaelan had started to breathe erratically in a gaspy sort of way and was having trouble walking, bumping against the walls of our home. I had told my husband that if he did not get us a doctor’s appointment I was heading to the emergency room, and he came through with an appointment with the pediatrician who had seen him the day before. When we arrived at the hospital where she was practicing that day, I had to get a wheelchair for my beautiful athletic son because he was too wobbly to walk on his own. The instant she saw him, she said “this does not look like the same boy I saw yesterday”. She heard his rasping breathing and instantly ordered a glucose check, as that kind of strained breathing is a characteristic of diabetic keto acidosis, when your body is being poisoned by the sugar it can no longer process. His blood sugar was over 400, and she told us in a very tremulous voice that our son had diabetes, that he was very ill, but that he would be all right. She started an insulin drip using a protocol for pediatric patients and arranged an ambulance transport to Children’s Hospital of Wisconsin, which was, she assured us, the very best place for him to be.
I know it sounds very strange, because no one would wish this disease on another human being, but in a sense I was relieved. We knew with a good level of certainty what it was that he had. It had a name and a course of treatment, and it was not a death sentence. During the ambulance ride, a very kind attending nurse quizzed him on his name and address, and other questions that would prove he was coherent. He almost wasn’t. But she told him it was important that he answer the questions when we got to the hospital because otherwise he would end up in intensive care, and that the ICU was not a place that he wanted to be. He rallied to the challenge, answered the questions, and thus began our 4 days with the incredibly talented staff at Children’s, for whom I will be forever grateful.
When I look back on this chapter of our diabetes journey, I realize that even though we made any number of missteps, we were lucky. Could we have recognized the signs earlier? Yes. Could one of the doctors who saw him have suspected and tested his glucose earlier? Again yes. But within 24 hours of our diagnosis, Kaelan was already stabilizing, and we were beginning the very steep learning curve that would consume us in the coming months and years. Had we waited two more days to get him to the doctor, the story would have had a very different and tragic ending.
Growing up T1D 