In February it is Feeding Tube Awareness Week. Feeding tubes are a great way to get vitamins, nutrients, and medicine into a person who may have a low appetite and a shortage of Mitochondrial energy to digest food.
I was so apprehensive to go down the feeding tube route with Harry. In my mind it was a huge step backwards and in some way admitting defeat to mito. I wasn’t particularly educated in the realities of feeding tubes and saw them as a permanent change in the way Harry was fed. I had no idea that he could still continue to eat normally as well as having the tube. Great Ormond Street convinced us to go ahead with the tube after Harry went into non convulsive status with his epilepsy and had lost a lot of weight and I can honestly say we have never looked back since! Harry still participates in mealtimes and absolutely loves his food but it gives us an element of control that if he doesn’t eat or drink enough for whatever reason, we can ensure that he remains nourished and hydrated. It also allows us to administer his vast quantities of medication quickly and painlessly without worrying that he is going to spit it out or refuse to swallow it. I would never be without the tube now. Mitochondrial Disease takes away so much control and feeding is one area that we can now keep control of thanks to tube feeding tube.
Message Leigh Network on Facebook if you have any stories you would like to share too.