We are more than just our feeding tube
We don't approach food medically. Tube feeding is more than just this feeding or this day or this regimen. Tube feeding is a lifestyle and we have to adapt to a society that is not set up around tube feeding. Oral feeding is a pillar of our society, and people who tube feed are the outliers, but we are families who experience this in very specific and unique ways. There needs to be room in the care plan for that.
People who tube feed have goals beyond the tube
We can be active; our feeding tubes do not have to be a limitation. And one day, we hope to not need our feeding tubes. We'd like our clinical teams to work closer with us toward achieving that goal and leading the life we want to live.
Not all people who tube feed are alike
You can't prescribe the same kind of care for everyone. Clinicians must understand each situation in terms of that individual's condition, personal goals, lifestyle, and home life. Putting everyone in the same category doesn't work.
We could use more hands-on explanations
It can often feel like a trial-by-error experience and that our child or our family are guinea pigs. Our clinical team would save us a lot of uncertainty, panic, and fear by being more educational up front and letting us know what to expect.
We want you to explore more options with us
It would be nice to have more check-ins with our clinical team to discuss options that would be more care- and cost-effective. Are there new or different accessories that could improve the feeding experience? Are there better formulas available, or are blends a better option? Are there ways to save money? Even with great insurance, the costs do add up.