S.D. Hintz

As most of you know, my 13-year-old daughter has a medical disability originating from a volvulus that occurred when she was 3 weeks old. Let’s just say it was a year of hospitalization hell, after watching her have a cardiac arrest, dying on the table and an intern consequently breathing life back into her. The result of the volvulus and numerous surgeries left her with short bowel syndrome and for a few years a gastrostomy tube for additional nutrition. After many years, she was fine, functioning as any normal child, but with chronic diarrhea. Over time, though, she was gradually losing all of her vital nutrition due to the diarrhea, which as of a few months ago had her hospitalized again for a week. Now we’re at the point where she receives 24-hour nutritional feedings through a nasogastric tube and she’s on multiple medications to keep her growth on track.

My daughter.

Fast forward to now. So we had it all planned with the hospital to do a procedure in June, when school is out, to have the nasogastric tube removed and a G-tube placed in her stomach, hence continuing the feedings. And then we received a letter from our insurance (and keep in mind we have good insurance, as my day job is at a Fortune 400 medical distributor). They tell us they won’t cover the procedure because it is “medically unnecessary.” Of course, this throws my wife and I through a loop and we start to reconsider the present situation.

So I start to contemplate. My daughter has been gaining weight successfully since she left the hospital, to the point where she has finally reached placement on the growth charts. In fact, she hasn’t been losing weight at all. Today I wrote a lengthy email (a good 10,000 words lol) to the 4 doctors involved: gastroenterology, hematology/oncology, pediatric surgery, and primary care. I give them my pitch. I tell them that insurance won’t cover their procedure and we want our daughter’s nasogastric tube removed on our next inpatient visit. I also tell them that we do a trial run of sorts, she ingests everything orally, along with some supplemental nutrition, and her weight gain is monitored over the months while maintaining her current medications. If at any time there is a lapse and she loses weight, then we consider getting the G-tube procedure done and fight the insurance company.

The end result? All of the doctors agree with me and in 2 weeks her nasogastric tube will be removed. And then the real test will began to see if she functions normally and continues to grow. We’ll cross our fingers and do everything we can to help her achieve her goal.

Ahhh…the wide wonderful world of healthcare…even when you have it.