When J started feeling sick on Monday night (12/27), I was concerned, but not terribly so. Although nobody we'd spent time with had gotten the stomach bug, I knew there was one going around, so I figured that was what was going on. He vomited a few times on Tuesday morning, but was feeling a bit better by the afternoon. Wednesday he still didn't have much of an appetite, but he drank some Gatorade and later in the day ate a waffle and some soup. I figured he'd be a brand new man by Thursday morning.
But during the night, he started breathing funny. It sounded like the way someone breathes when they've just run up a few flights of stairs. And in the morning, he started again with vomiting, worse than on Tuesday. I could tell by looking at him that he'd lost a considerable amount of weight -- his sweet chubby cheeks had melted away and his clothes were hanging off him. He had chills even though he didn't have a fever and I had the heat all the way up to 70 degrees. I was scared. I called my husband at work and said we needed to take him to the pediatrician. He came home and I wrote a page-long list of symptoms and timeline of the illness.
My husband took J to the doctor solo so that we wouldn't have to take the baby. He called me after they weighed J -- he'd lost 15 lbs, or about 15% of his body weight. I started to cry. He called me back after the doctor diagnosed strep throat. He said she didn't seem particularly worried about the weight loss or the breathing, and pretty much attributed it all to the strep. (For the record, I've had strep throat a dozen or more times in my life, and never vomited or had trouble breathing. Plus, I always had a high fever and trouble swallowing, and J had neither.)
We gave him the first dose of antibiotic as soon as he got home. He asked for some cucumber slices and ate them all, which I saw as a good sign. But his breathing was still very labored and I was afraid to leave him alone at bedtime. My husband volunteered to sleep on the floor in his room. Before bed, J told me "I'm really worried about myself." I called to speak to the on-call nurse, and she said just to make him comfortable, give him Tylenol for pain, turn on a humidifier, etc.
We all went to bed but J was up a dozen times or more to use the bathroom, so none of us could really sleep. I could hear my husband getting cranky so I said I'd take a shift. When I went into his room I panicked. He was working so hard to breathe that he was grunting. I knelt at the side of his bed and prayed, and it was like something screamed in my ear, this is not right. I said to my husband... we have to take him to the hospital. This is how people breathe at the end of their life.
It was the longest, scariest night of my life...
At the hospital, J was diagnosed with diabetic ketoacidosis. (He'd never been diagnosed with diabetes prior to this.) His blood sugar was over 500, and his white blood cell count was astronomical. He was dangerously ill, septic, and if we hadn't taken him when we did he might not be with us any more. He also had air around his heart and the surgeons said there was a chance he had ruptured his esophagus from vomiting, and they might have to do surgery to repair it. However, he was too ill for surgery. On the other hand, if he did have a ruptured esophagus and we waited too long to operate, he could die. He was admitted to ICU and was barely conscious, lying there struggling to breathe with tubes going into him in every direction, monitors keeping track of his respiration and heart rate. I would ask him, "can you see me?" and he would turn his head weakly in my direction and try to open his eyes, but I knew he was barely aware of what was going on.
Finally, in the late afternoon, his sugars came down somewhat and he began responding to the antibiotics. He woke up and was talking. The surgeons said that if he continued to improve, they could do a non-invasive test to check for the esophageal tear in the morning. My husband stayed in the hospital with J and I spent the night at home with the baby, barely registering the calendar change at midnight. I left the house at 7am to be there for the scan. My brave boy, who only the week before spit out a chocolate and cinnamon cookie I'd made because it was disgusting, willingly swallowed the contrast material while lying under the huge imaging machine and my husband and I both held our breath. When the radiologist said that there was no tear in his esophagus, we both began weeping gratefully. J's nurse came and put her arms around both of us. For the first time, I really felt that he was going to be okay.
He continued to improve throughout the day and the hospital began educating us about Type 1 diabetes and the kind of treatment J would need once we got home. When I think back now, he'd had symptoms of diabetes for weeks but I hadn't registered it because all of my experience with diabetes (my grandparents, aunts and uncles, etc) has been with Type 2 (adult-onset) diabetes. In Type 2 diabetes the body's cells become resistant to insulin, but with diet, exercise, and insulin-sensitizing medications, the cells can become re-sensitized. However, in Type 1 diabetes, the body stops making insulin altogether, and insulin must be injected several times a day in order to sustain life. It's a delicate balance -- too much insulin, and the blood glucose level can drop dangerously low, too little and it can go too high. Both conditions are potentially life-threatening. So, we've had a crash course in how to check blood glucose levels, measure and inject insulin, calculate how much insulin is needed to cover however many carbohydrates he eats, and what signs to watch for in case of potential drops or surges in blood glucose levels. It's pretty overwhelming, and I've spent a lot of time in tears of anger, grief and frustration that this had to happen to my precious boy, who's really never been sick beyond a passing cold or two. I'm grateful beyond measure that he is okay, it's just going to take a lot of adjusting to "the new normal."
We have been through hell and back. You never know just how much you can handle until it happens to you. We are fortunate to have a large support network of friends and family who have seen us through this ordeal, and I am so grateful for them. We have a long and difficult path ahead of us.
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