Feeding Tube Awareness Week: How Does It All Actually Work?

 

Today for Tube Feeding Awareness Week, I will share some of the little pragmatic details.

Behind the Scenes: How Does it All Actually Work?

Upon discharge from the hospital, the hospital arranges with a company to provide the patient's tube feeding supplies, following a doctor's prescription. In our case, Atrium hospital system has its own company, Atrium Health at Home Infusion that has two branches, one supplying TPN supplies and one supplying tube feeding supplies. When Thomas was first discharged, I had to work with both departments!

Once a month, I receive a phone call from the company about Thomas's needs. Then the company ships the supplies to us before we have run out of supplies.

This results in many boxes, as in the picture above (which does not show even one month's supplies, as the last two boxes arrived the following day). (And at discharge, I was also receiving many boxes of TPN supplies by courier weekly.) We have had to give away a lot of books (gasp!) in the library off of our the master bedroom to make room on the shelves to house these tube supplies plus other various medical supplies for Thomas. Each month, I feel like I'm up to my neck in boxes!

Chris and I are exceedingly grateful for having good, corporate insurance. I know grave situations like this are unusual, but *they're not that unusual*. Remember yesterday's statistic that something like 20% of children are tube fed at some point. In fact, on our little cul-de-sac of nine homes, I believe FOUR of the homes receive tube feeding or infusion supplies to keep a family member healthy and alive. Going through this experience has made me extremely leery of cost-sharing health insurance groups or choosing to go without good insurance when options exist.

The feeding tube pump costs between $700 and $1,000, so the tube feeding company owns it and rents it out to Thomas, the patient. Insurance supplied the IV pole and a backpack for portable use, so we own those. Each month, we are provided enough single-use feeding bags (500 mL or 1,200 mL at $7 per day) plus pouches of food, two new extensions, and any ancillary supplies we might need (like blunt syringes or additives to formula, such as BeneProtein--Thomas used to go through about $100/month of that). Every three months, insurance covers a new button (about $150).

The cost of formula varies widely, and increases very high as the formula becomes more and more specialized for rare disorders. Thomas's formula seems to be available online for $7 to $13 per pouch. Each pouch is 360 calories, so say, for example, a child needed 1,500 calories per day and was exclusively tube fed, that would cost at least $32 per day, which is $992 per month. This is a middling cost formula; Thomas's original formula cost much more!

Thomas's need for tube feeding has waxed and waned, but he currently needs about one-third of his 2,000 daily calories supplied by tube feeding. His surgeon feels confident that Thomas will learn to eat all his calories by mouth at some undetermined point, but if he doesn't, tube feeding can keep him afloat forever, if need be!

Some families are having to pay for the tube feeding supplies out of pocket. I remember when Thomas switched formula and I had several cases of his old kind to give away. I got connected with a family getting treatment here from another country, and they had no insurance coverage for tube feeding, so they were trying to feed their sick child completely on their own dime, which pierced my heart.

The Oley Foundation is a charitable organization that educates about tube feeding and also provides a venue for tube feeding families to donate away unused formula and supplies for free; in fact, selling is prohibited.

The Oley Foundation offers a treasure trove of articles and videos to learn more about Home Enteral Nutrition (tube feeding) and Home Parenteral Nutrition (TPN at home), so head on over there if you'd like to learn more!