The gathering storm
For months after Kaelan went into DKA I kept thinking that I should have seen it coming. The number of mistakes I made on the way to diagnosis, and beyond, is breathtaking.
The school year when he was diagnosed was a strange one for Kaelan. We could see that there were unusual issues with him, but we did not understand them. Kaelan had always been a very good student, with his head in the clouds, but focused when he worked, bright and hard working. Suddenly that year he seemed to lose interest in class. He would become very unfocused in school, not listening, staring at nothing for minutes on end. He would come home from after-school sports and go straight to sleep in his bed—-a very unusual behavior for him. He would eat ravenously, more than any of us, even though he was only 11: we joked about it. He would drink enormous quantities of water. And his pee was sticky! Retrospectively, of course, these signs are unmistakable—even at the time, to me, they seemed to signal diabetes, but I was under the impression that diabetes is a genetic disease (it is) that you inherit from others (you don’t): I knew there was no diabetes history in our families, so that could not be it. Towards the end of the first semester, we had a talk with Kaelan’s teacher, and she agreed that his behavior was strange, but none of us could figure the enigma out. At his physical that year, we discussed Kaelan’s symptoms with his pediatrician. She could not come up with an explanation either.
Lightning strikes
Close to the end of the year, Kaelan came down with an ear infection. His mom took him to an urgent care clinic, who tested him and gave him antibiotics. Within 4 days he had lost close to 15 lbs, and was not feeling any better: in fact, he was progressively getting more and more apathetic, staying to his bed most of the day, hardly speaking. I followed up with a visit to his doctor’s office: we were frightened by his weight loss. Kaelan’s pediatrician was off that day:the pediatrician on shift told us that the infection must be resistant to the specific antibiotic, and gave us a second one. She said that it would take 48 to 72 hours before he got better. The next day Kaelan’s weight loss was up to 18 lbs altogether. Mary Pat, my wife, was very concerned: she suggested taking him to the emergency room. I disagreed: the doctor had said we should wait longer. My wife insisted. She looked straight at me and said: “You can see his skull behind his face. His eyes are all sunken in. He looks like Jim (my brother-in-law, who had just died from leukemia).”
I was shaken when she said it aloud. We called the nurse at the practice and explained our quandary. She was doubtful but invited us to consult again and be seen. We drove over right away. As we walked from the car, Kaelan was dragging himself over, breathing fast. The moment we walked into the pediatrician’s presence, she started listening intently at Kaelan, and told us that he had Kussmaul respirations: fast, shallow breathing characteristic of too much acidity in the body. She immediately asked for a glucose meter and a strip, and pricked Kaelan for a drop of blood. After waiting three seconds, she raised her eyes, looking straight at us, and told us: “Kaelan has diabetes.” Tuesday May 3rd, 2016—a day I cannot forget.
The storm around us
I was in denial: “it cannot be, we have no diabetics in the family.” The pediatrician told us that 9 out of 10 kids diagnosed with diabetes have no family antecedents. Kaelan was in DKA, diabetic ketoacidosis, a situation where, with his glucose level too high, his body becomes too acidic, and his life is in danger. We had to take him immediately to the emergency room.
I had two emergency rooms to choose from, as we were equidistant to two: Children’s Hospital was towards Milwaukee, and Aurora was towards Madison. I knew Aurora would be largely empty, as it was a brand new hospital. I decided that Kaelan would get immediate and more personal treatment there. I took to the road fast—way over the speed limit, ready to explain to the highway patrolman who stopped me that it was a medical emergency.
When we arrived, Kaelan could barely get out of the car. The attendant offered him a wheelchair that he accepted. I got irritated: why couldn’t Kaelan walk on his own? It seemed like malingering to me, but MP encouraged him to sit in the wheelchair, and we arrived at the ER. Right away, several nurses surrounded him. The on-call doctor explained that he would need to transfer Kaelan to Children’s because Children’s had a good DKA protocol, and they, at Aurora, did not feel confident that they could pull him through. When I voiced my thought that they should start treating Kaelan right away, he told me about several children who had died recently in DKA in the state because their hospital ERs were not specialized in pediatric DKA. When I got ready to take Kaelan to Children’s, the staff laughed at me: there was no question of my driving him over, he was way too sick, an ambulance would take him, with a nurse applying Children’s Hospital protocol all the way.
So we waited for the ambulance that arrived a few minutes later. Kaelan was barely conscious. The nurse kept on telling him: “stay up, Kaelan, stay up, if you are sleeping when you arrive, they will put you in a different ward: you really want to go to the diabetes ward, so stay up, Kaelan, stay up.” I understood very well what she was saying: he was far gone, but he badly needed to remain conscious for another hour. I did not say anything, but at that moment at started to feel true anguish: I did not know if he would survive. MP went in the ambulance with Kaelan: she and the ambulance paramedic kept telling Kaelan to stay up. Kaelan, like a good soldier, remained conscious. He made it to the diabetic ward.
Growing up T1D 