Coping with a Chronically Ill Child
I have this recurring dream. We're in the middle of some terrorist act, some crazy event where we can't find our loved ones and somehow, my l2-year-old daughter, Corey and I have become separated. She's with someone -- a neighbor I think -- but I can't find her. I keep checking my watch. If I don't get her next drink to her in time -- the "medicine" she needs every two hours to keep her blood sugar stable - she could die. Somehow, miraculously (this is a dream after all), I find her and am able to give her the simple Argo cornstarch and water mixture that she needs to stay alive. But it's the last solution I have, meaning Corey has about two hours more to live unless I can find more. I'm drenched in sweat and riddled with anxiety as I scour desperately through my war-torn town searching for a store that hasn't been decimated. I'm trying not to show Corey how frantic I am as I clasp her hand tightly and lead her through the rubble. She starts to complain that she is tired and I know time is running out. And then I wake up.
Corey has Glycogen Storage Disease (GSD) type la, a rare metabolic disorder which means her body is missing a liver enzyme necessary to convert the stored form of sugar (glycogen) into the usable form (glucose). Glucose is the essential source of energy for the brain and is the necessary fuel for every cell in our bodies. Because this enzyme is missing, she must be fed constantly in order to get the sugar required for her body to function. It's a genetic defect, and my husband and I both carry the recessive gene. At the time I was pregnant, in l992, there was no testing for this disease. Nor would we have even thought to be tested since there is no history of GSD in our families.
We spent six weeks at Columbia Presbyterian in NYC when she was seven months old trying to determine what was wrong with her after she had vomited nearly every formula on the market. Then another three weeks at Boston Children's when she was l8 months to get her on the cornstarch regime. Not to mention various hospitalizations in between -- first for a liver biopsy, then to put the gastrostomy tube in her stomach, as well as emergency visits due to the stomach flu. We tubed her for three and a half years, until finally we went to the Kennedy Krieger Center in Baltimore, where we spent another six weeks teaching her behavior modification techniques so she would drink her cornstarch, though we still tube-fed her at night. It was our first step towards a "normal" life.