Thursday, February 9, 2017

Feeding Tube Awareness Week 2017 - Day 4 --- The HOW of our Feeding

I have shared our stories on how we ended up with two little boys who needed feeding tubes. I am sure they left your heads scratching on the WHY, welcome to the club. It's all so confusing, but our boys have always done that to doctors and their parents. LOL.

Today I am going to share HOW we feed our sons.

When we started this journey with Charlie Brown we started with formula. Think baby formula but with the nutrition an older children needs. It wasn't great, but it was all we knew. It took a bit to figure out because he was refluxing a lot until we realized he was one of those kids who couldn't tolerate soy oil. We got rid of that with a new formula and things got better. They weren't great, but he wasn't refluxing every meal.

As we went along I started to research. Yep, I went into research mode like I do with all of my kids issues. I am pretty sure my kids doctors roll their eyes when they get an email or phone call from me saying, "I have been reading about ...". But, they also respect me and, most of the time, realize I have done quality research and will go along with me or even think I figured it out quite well.

My research was looking at blended diets. This is not a new concept. In fact, people who had feeding tubes before the formula industry began, and for quite a while after it began, were given blended diets. You simply blend real food and feed it via tube. Not a hard concept. We decided to make the switch.

This was a big learning curve as I had to get enough calories in but also do it in a small enough volume that his tummy was OK with it being in there. We did a lot of trial and error as most GI dietitians are NOT equipped to help you feed your child real food. That was a shocker to me. I figured they were DIETITIANS. I thought that meant this would be their area of expertise. I was told it was great, go to the FDA with his calorie goal and it will tell you the amounts of each type of food he should have because they didn't know. They only knew how to tell me how to mix the formula for the right concentration based on calories/oz. Yikes.

I blended, froze, and served him pureed meals. He did so well on them. He was able to go at a faster rate than with formula and not reflux. He also looked so much healthier with real foods on board.

When Linus received his feeding tube I had done even more research. There was a "formula" on the market called Nourish.

Nourish is an organic plant based diet that comes shelf stable and ready to feed. No mixing, no blending, nothing. I knew they would recommend formula, I had my suggestion ready for them. Amazingly they approved of the formula I wanted (it isn't really a formula, it's just a blended diet in a packet, but qualified as formula with the doctors, nurses, dietitians and insurance companies). We went home with that prescribed.

Now I blend a lot of their meals and use Nourish on hard days or when travelling.

But how do we physically feed our kids? I know people have asked us. Here's a break down of the steps with pictures included at the end.

1) I put a 12" extension (long tube) onto their g-tube (after filling it with water so that I don't fill their tummies with air) that's in their tummy. It locks into place.

2) I fill a 60ml o-ring cath tip syringe with the blended food.
We use the Miracle brand o-ring syringes that you can purchase online. The Squirrel Store has the cheapest prices, most reliable in-stock, and quickest shipping I have found.

3) I put the syringe into the large opening of the extension and unlock the clamp.

4) I slowly push the plunger on the syringe and allow the food to enter the extension and eventually their feeding tube, which leads to their stomachs. This has to be done slowly or it will make them reflux or fill up too quickly.

5) I close the clamp, remove the syringe, and repeat until all the food is gone.

6) I flush the extension with 60ml of nursery water. This not only cleans out the extension of extra food so we don't miss any nutrition, but it also gives them 2oz of water and cleans out the g-tube so it won't clog.

Yes, we use a different type of syringe for this. These syringes last about a day when you put real food into them. The rubber end just kind of eats away. So we purchase the o-ring out of our own pockets since once will last for months. These are paid for with our insurance through our DME so we use them for other things like water pushes and such.

7) I remove the extension, put the cap back on the g-tube, and we are done for the meal.

Some of our other medical supplies we receive are:

Pump: This enables us to give larger feeds that need to be done at a slower rate so their body will accept it, give feeds on the go, or for overnight feeds (just what it sounds like, a slow rate all night long) There are other brands, but I feel this is the best for a blended diet and we are blessed that our DME provides the Infinity brand.

Feeding Tube Bag: When I use the pump I have to use a feeding tube bag. You can see it looks like an IV bag of sorts with long tubing and a cassette to go into the pump. I fill it to the desired amount, attach it to the pump, set the rate and volume on the pump, attach the end of the tubing to the extension mentioned above, and hit start. We hang the pump and bag on an IV pole at night or put it all in a backpack if we are on the go.

10ml Syringes: The little syringes are for medications, vitamins, and tube changes (yes, I have to change the g-tube that's actually in their tummy twice a year or if it fails).

We have many more supplies that come to us each month from our DME, but these are the most commonly used.

Benik Belt: This is what Linus has to use to secure his extension because he cannot tolerate any tape on his skin. This is called a Benik belt and has been such a huge help for him and has kept him from having massive sores due to his tape issue.

Vitamix Blender: In the tube feeding world, it and the Blendtec are pretty much the only acceptable blenders. They are professional grade (if you get a milkshake at a fast food or sit down restaurant, you got it from a Vitamix in almost every situation), and can handle the amount of blending needed to ensure a smooth puree that won't clog a tube. You can do it with cheap ones but you will burn out the motor pretty quick and you must always strain your blends and limit what you can put into them. It triples your work and limits your food choices.


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