Ellie seems to have her first nasty stomach bug this week. I say “seems to” because, after her surgery, she is mechanically incapable of actually throwing up. In addition to her g-tube for feeding, she also had a Nissen fundoplication, which tightens the stomach (actually wraps it around itself) in order to prevent the epic reflux that meant she couldn’t keep any food down. It has worked well for the last seven months, but I knew the day would come when we would see the flipside – she can’t throw up, even if she may need to.
As you can imagine, that has meant a day or so of spectacularly awful diapers. By this morning, all doubt was gone that she clearly had something going on. As we drove to preschool this morning, I mentally debated which of our many doctors to call. I’d call the pediatrician, but our primary one is on maternity leave and I don’t feel like explaining Ellie’s background to another doctor. Maybe I should call the GI doctor? Or the Complex Care coordinating pediatrician from the hospital? Oooh, maybe the nutritionist…
And then I stopped myself. Hello, Liz. This is not your first time at the rodeo. You know exactly what they’re going to say. Any doctor you call will say this:
Oh, yeah. Virus. Bummer. Keep her hydrated.
And so we made our way to Target, and I made the executive, unilateral decision to put her on Pedialyte for 24 hours. I did not call or in any way consult a single one of the 9 care providers on her “team.”
This shouldn’t be so revolutionary. A second-time mom knows that she doesn’t need to call the doctor in the middle of the night for every warm forehead or unfortunate puke. You get some pedialyte, some ibuprofen, and an extra tub of Triple Paste for the horrific diaper rash, and then you wait for that virus to run its course.
But with a highly-medical-ized child, even seven months post-hospital, it’s easy to feel like you’re a passenger instead of the driver. With Ellie, she still sees a minimum of two therapists every week, and many other specialties check in anywhere from once a year to once a month. Anything related to food intake is especially loaded. We’re working very closely with a nutritionist to make sure we walk the line between making sure she has adequate nutrients and protein and hydration to keep her body chugging along and give it enough to grow, while not giving her too many calories for her very-short frame. It’s all calculated at every visit, and then programmed into her feeding pump. It’s math, no consideration for demand or hunger or self-regulation, because there is none. So you can see why I get a little gun-shy when I think about doing something totally different.
But Ellie has never been sickly or fragile. She has never been immuno-compromised. She most certainly is not underweight. She is a nine-month-old with a stomach bug, and I rather doubt the formula that I methodically pump into her stomach is making her feel any better right now. She will be just fine, and well-hydrated, with a day of Pedialyte while this thing works its way through her system. Yes, I’ll keep an eye on her and will make the call if anything seems unusually concerning. But I don’t need a team of physicians to tell me how to take care of an infant with a virus.
Oh, right. I’m in charge, here.
