I didn't know that he had every sign of diabetes for the two weeks previous to ending up in ICU. Hungry all the time, thirsty, frequent bathroom visits, less energy, leg cramps, heartburn, more stressed. Of course he's hungry- he's grown two inches in six months; of course he's thirsty-he's finally drinking water the way we have drilled into him for the last ten years; of course he's peeing a lot- he's finally drinking!; of course he's tired- remember he grew two inches in six months! The little voice in my head (my instinct, my internal wisdom, the voice I tell all my clients to never ignore) kept saying... "there is more to this... something is wrong..." Instead I scheduled an appointment for him when we got back from our trip. Three days before ICU, I even told my husband and best friend that T had signs of diabetes, but dismissed it because the idea seemed, for lack of better words, absolutely absurd. Not our family, not our son.
Two days before he became so seriously sick he took his second degree brown belt Shotokan Karate belt test and passed with flying colors. The next day he was tired. It made sense, he had worked hard. The next Monday he went to school, although he looked exhausted. We had planned on leaving that day for a business trip with the family. I picked him up from school and knew that the trip wasn't going to happen. Something was wrong. He looked gaunt, skeletal, anorexic. He said he was tired and his legs hurt. He had heartburn, and a stomach ache. He smelled strange, although it took me a while to recognize the smell. Like super ripe fruit-right before it goes bad. I attend women in labor and happen to be one of the people with a genetic ability to smell ketones. I have smelled ketones on pregnant women with diabetes and on women in labor. I didn't connect the smell to T until we were at the ER. Then it all made sense.
DKA hit T hard. Diabetic Ketone Acidosis is a condition where high blood sugars create a serious chemical imbalance of the blood. The body's pH becomes eschew; creating a host of serious potential complications, including seizures, heart rhythm issues, brain swelling, coma, and yes, sometimes death. T's blood chemistry values looked pretty bad, his doctors and nurses were shocked he wasn't in much worse shape. His body was strong and did a lot of compensating for his condition. It took three days in ICU and two and a half days on an insulin drip with constant fluid replacement changes to get him stable.
An A1C is a blood test that measures the average blood sugar in a diabetic for the last three months. T's was 14. Yep, 14. Ideal is 6.5 to 7.5 for his age. The scale doen't even go past 14. His average blood sugar had been over 400 for the last few months. "Normal" is between 80-180. At least we have lots of room for improvement!
In the meantime, we became students of diabetes. Learning, questioning, drilling educators, doctors, nurses and the occasional stranger in the cafeteria, elevator and hallways. The more I knew, the less scared and out of control I felt. The more I knew, the better I felt. The more I knew, the better we could cope and the sooner we could go home to adjust to our new normal life.
The diabetes learning curve is steep and demanding. Carb counting, blood work deciphering, short acting, medium acting and long acting insulins, blood glucose meters, insulin adjustments, syringes, insulin pens, insulin resistance, highs , lows, rescues and recoveries, honeymoon periods... the list goes on and on. Then you take all that you learn and try to apply it to a human being that is never static and always changing. Emotions, puberty, sleep patterns, food processing and hell, lately blinking seem to change everything we have just figured out.
We are home and honeymooning. T is gaining back the 15 or so pounds he lost. Insulin doses are dropping dramatically and sugar consumption is rising dramatically. Lows, lows and more lows. I am sure as soon as we figure it out-it will change!
A month ago I took for granted how mature, brave and wise our son is. I didn't know how supportive, and brave his siblings are. I didn't really know who I could depend on among my family and friends when life throws an unexpected obstacle our way. I didn't know how profoundly, we as a family have touched the lives of those we love. I didn't know how grateful I could be to the people that have supported us and loved us through this time. I didn't know the depth of worry and love we could have as parents for our children. I didn't know that a T1 diagnosis would introduce us to a whole new community of warm, loving, supportive people we never would have otherwise met. A month ago I didn't know I had room for one more cause in my life... now I do.