Leaking Green

We are about a week into a natural food diet with Lucas. Nothing radical, just spinach and coconut water so far. We are using it to supplement some of his regular water that he needs and will move on from there.

One of my biggest hesitations so far is the amount of volume that will increase with choosing to go this route. Lucas has issues with retching. It comes on in spontaneous bouts and there isn't much we can do to control it. He tends not to tolerate thicker formulas so we thin his food down making a larger volume, thus a longer feed time. Over the past several months we have been lucky to find a formula that works that allows him to only get 4 feeds throughout the day plus some overnight, depending on if he is well. The natural food diet will be a lot more volume, thus he will be sporting his backpack much more often.

So back to the title of this blog post. Yesterday around dinner I gave him his regular dose of spinach and coconut water. The feed seemed to go fine. We have had some issues with pieces of spinach being lodged in the pump but it all seemed normal.

10pm rolls around and we are ready to hook him up again. His attachment goes in, looks secure and we start the feed. I go back in to check him around 10:30 and there is green liquid all over his bed. What the heck?!

After the feed is stopped, bag is cleaned and examined as well as the pump, we are both baffled. Thankful that Lucas is a deep sleeper and we managed to change him and switch beds without waking him up we are cleaning gross formula off everything.

It appeared that his tube was leaking from the inside. I wasn't prepared or in the mood to take him in to fix it. So we bandaged him up and I sat down with my good friend google.

After a period of time searching I read another moms blog and she had a similar story. It turns out that a piece of food can make it all the way through the pump and into the actual gtube and get stuck there causing it to leak because it isn't properly sealed. Solution: a darning needle to fish (gently I might add) around the gtube and see what you can find.

I figured Lucas would not enjoy this process and be too squirmy while awake so at 6am this morning off I went to his room. Took off the disgusting bandage, set up my flashlight (could have really used a head lamp) and set to work. It took all of about a minute to pull out a little disgusting mass of spinach.

Seriously! All that grossness because one little piece snuck through.

Lesson of the day: Even when you think it's blended....keep blending!

May 21, 2014 - First experiments

My first experiment with blended food was an easy one. I decided to do a simple spinach and coconut water mix. The first batch that Lucas got on the 19th was a small 50mls but it was a success! He didn't gag or gulp with it at all. The bonus too was that his stomach was still soft afterward. 

The concoction was a bright green mixture (see below) that doesn't at all look apetizing. Looking at the bag made me very thankful that he doesn't have to taste it.

After another lengthy discussion with the dietician we were reminded again to start slow. With the summer months approaching and the need for more fluids the timing is great. 

I am only slightly reluctant about one thing. In order to get his calories with this diet he will have to be eating more frequently because the volume is larger. Over time I am sure I will feel differently about it.

Round one was a success!

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!!