Tube feeding been a part of our family life since Dominic was 4 months old. It’s not always been easy, or much fun, but the tubes are what have enabled us to live our lives out of hospital, as a family, so I will always have a healthy respect for them, even if they can be a royal pain in the butt sometimes.
We’ve tried tube feeding with a wide variety of feeding tubes, ranging from nasogastric tubes to a Roux en-Y jejunostomy. Dominic has been through many different specialist feeds as well delivered by gravity feeds and feeding pumps of different varieties.
I remember the early days very well, the shock of being discharged and suddenly responsible for something so alien. I too turned to the internet, searching to try and make sense of what was going on, as well as trying to find information to help me make what have been very difficult decisions.
Because of my own experiences I am using the next few pages to try to give you the information that I was looking for as we faced different challenges along the way. Things haven’t always gone well for Dominic even though I did my best to learn as much as I could so I could make informed decisions on Dominic’s behalf. I believe that I did my best with the circumstances that we were faced with, and sometimes it was a case of picking one less than ideal choice over another. I hope my experiences prove useful to someone else.
If you have found this page because tube feeding is very new to you and your family, I suggest that you start here as this video probably says the most important things I want to tell you about how tube feeding has affected our family.
And when you are ready, here are some of the other things we have learnt and experienced over the years…