Life with a Tubie

It has been almost 2 years since my son Lucas got his permanent gtube put it just before he was 2 years old.

The surgery has done wonders for him and we are so thankful that he had it done. Lucas's main issue was that he aspirates. This means that when he swallows that food and/or liquid goes into his lungs and not down his esophagus to his stomach.

During the first 2 years of his life a lot of time in the hospital with lung infections and other issues caused by his aspirating. Lucas also has a disease called Tuberous Sclerosis Complex (TSC) which has caused tumours to grow throughout his body, including his brain that have had an effect on his development, including his ability to swallow.

Upon Lucas getting his gtube we learned about all of the formula options that were available for him and soon decided that it would be really convenient to just pop open this little can and pour it in his bag to eat and be done with it. As you can see from the photo below, other than water, I can't pronounce any of the ingredients in the formula that he eats every day.

Recently Lucas has also had increased seizures (from the tumours on his brain) and increased medications to help him cope. There is a diet called the Ketogenic Diet which has been proven to reduce seizures in children and adults. This diet of course is natural foods and we haven't even begun that process yet with Lucas.

So, we are on a mission. Time to kick the formula (over time) and have this kid starting to eat whole foods blended through his tube. The ultimate goal is that he can get on this Ketogenic Diet.

I've bought a book, read lots of blogs and talked to other parents of tube fed kids for advice and ideas. The general response that I have gotten is 'it depends'. It depends on your child and what they can handle. Trial and error if you will.

So now the rubber meets the road. It will be messy. Some days I will have great success and some days I will have great failures. One thing that I have going for me is that thankfully Lucas can't taste any of my concoctions so as long as I get the calories and consistency right, I can mix whatever I want.

If you are reading this and have an idea or thought for me on how to do this, comment, share and let me know what you think.

It takes a community to raise a child and I am pretty sure it is going to take a community to figure out this natural food transition too.

Let the blending begin!!