Adventures In Tube Feeding: G-Tubes & Autism Part 1
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.
The only reason I know the first thing about G-Tubes, which allow for liquid feedings through a port on the abdomen, is because I am fortunate enough to work for Lauren’s Hope. Otherwise, tube feeding has simply never been part of my personal experience. But then last year, entrepreneur, special-needs mom, and Lauren’s Hope customer, Julie Bombacino, reached out to tell us about a new product line she was launching called Real Food Blends. In talking with Julie, I learned quite a bit about tube feeding and the benefits of whole-food diets for tube-fed people. I had no idea that a year later, I would be emailing Julie in a panic, asking for her tube-feeding-mama expertise as doctors informed me that Will was in need of a G-Tube. But that’s exactly what I was doing about two weeks ago, and Julie, to her credit, didn’t just email me back. She called right away and listened as I poured out the whole unbelievable saga.
First, I explained, Will has autism. He’s always been a very picky eater. I don’t mean that in an, “I hate lima beans,” type of way. I mean, Will, who is nonverbal and has sensory integration dysfunction, Obsessive-Compulsive Disorder (OCD), various allergies, and Non-Celiac Gluten Sensitivity, among other food intolerances (and was therefore already on a gluten-, casein-, and soy-free diet), has never had a steady diet of more than a dozen foods. And then recently, he narrowed his acceptable foods again and again until finally, one day, he was taking his many daily vitamins and supplements in syringes of Gatorade, eating his gluten-free pretzels, and that was it.
When your choice is to watch your child bang his head on every available hard surface to the point of concussion or let him eat pretzels, you go with pretzels. But pretzels and supplements, no matter how great the supplements, does not a healthy child make. Our pediatrician ran tests, and we ended up being admitted to the hospital for hypokalemia -- dangerously low potassium levels. Will, age 9, had such low potassium that he was at serious risk of dying from a heart attack.
We spent the next few days working on getting Will’s potassium numbers up and feeding him syringes of rice milk with protein powder. I sang to my son as teams of caring professionals held him down for blood draws while I held his hand and wondered silently if he was going to die. Between feedings and procedures, we were busy consulting with all sorts of doctors and specialists. The GI (gastroenterology) Attending came to see us with his team a few days in and said, in no uncertain terms, that Will needed a G-Tube because, as we had all been discussing, his potassium was back to a healthy level, but it would drop right back down if we went home and he continued with this hunger strike.
I kept it together long enough for the GI team to leave and to have Will tended to, and then I walked out into the hall and cried my eyes out.
*This is a multi-part blog series in which I will share the whole story of our switch to G-Tube living. Please feel free to ask questions, and I will be glad to answer. If I cannot answer, I will do my best to obtain an answer from a qualified source. Please be sure to subscribe to the Lauren’s Hope blog in the right-hand margin so you can always stay up to date with all our latest articles.