Those of you who follow the Lauren's Hope blog regularly (and who doesn't?) may recall that I shared a personal story earlier this summer when my 9-year-old son, Will, was diagnosed with Severe Feeding Aversion (that's him, at left, in the hospital) and underwent surgery to place a Microvasive G-Tube. This feeding tube works by way of a port on his abdomen, allowing us to give him all the nutrition he needs while he undergoes long-term feeding aversion therapy, a form of occupational therapy that addresses the behavioral, sensory (texture, smell, temperature, etc.), social, cognitive, and OCD (obsessive-compulsive disorder) issues surrounding feeding.
Years ago, I learned about Durable Medical Equipment (DME) companies when my husband was diagnosed with sleep apnea and had to get a CPAP (Continuous Positive Airway Pressure) machine. I quickly learned that within our insurance policy, there was a little section on which medical devices were covered, when, why, how often, how much, and for which conditions. It was confusing to say the least. Fortunately, my husband went to our approved local DME shop, got fitted for his alien space helmet (have you seen one of these things?), and that was the end of that. Every year or so he would go get updated equipment, but really, there wasn't much to it.
In Part 1 and Part 2 of Adventures in Tube Feeding: G-Tubes & Autism, I shared my family’s recent medical emergency. My 9-year-old son, Will, who has severe autism and is nonverbal, went on a hunger strike, and as a result, ended up in the hospital for nearly two weeks, ultimately getting a feeding tube called a microvasive G-Tube. Now, while he is undergoing extensive feeding aversion therapy, Will can get all the nutrients he needs through what is essentially an access port to his stomach.
Recently, I shared the news that my nine-year-old son just spent 11 days in the hospital due to severe feeding aversion issues that resulted in life-threateningly low potassium levels. So, what is a feeding aversion?
If you’ve followed the Lauren’s Hope blog for a while, you know that sometimes I write about my kids and their medical needs. Julia, 7, wears her Lauren’s Hope medical ID bracelet for her chocolate allergy and for the simple fact that I know she would completely freak out and forget our phone number in an emergency. Will, 9, wears his Lauren’s Hope medical ID bracelet because he has severe autism and is nonverbal. He’s had the same one for quite a while now, but last week, I had to order Will a new medical ID tag. The reason? Will just spent 11 days in the hospital and got a G-Tube.