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As I have written a few times before, my daughter Taylor has Kidney Disease. This kidney disease is something that she inherited from my wife and I so we have gone through a lot of testing and therapies but eventually she will need a transplant (from me).

Over the last couple of years one of the real problems that Taylor  has is that her Kidneys do not hold and retain her water as well as a normal person does. Because of this defect Taylor has to drink between 4 and 6 liters of water a day, a lot for a 14 year old.

Drinking so much water leaves little space in her stomach, or hunger even, for Taylor to eat very much food and over the last few weeks she has been eating less and less as she was starting to feel really sick in the morning. This led to a hospital visit AGAIN a little over a month ago and one of the Nephrologists at Alberta Childrens Hospital suggested an NG tube for now and a GI tube (a tube through from her abdomen to her stomach) when she can get scheduled for it.

What is an NG Tube

An NG tube is a little thin hose that goes up through a nostril, across the sinus cavity to the throat and then down into the stomach. Usually people that can not eat, or in Taylors case can not eat enough in a day, will get these tubes. The NG tube will last a month or so and there are some that are only rated to be used for a week. After the NG tube expires it is pulled back out through the nose and then a new one is inserted.

Taylor with her NG Tube

So first the NG Tube. I was not at the hospital the morning they put this tube in. What happens is that the nurse will put a tube in through the nose, down the throat, and into the stomach. The whole process takes only a minute or so but the feeling the first time around made Taylor crazy. She ended up in tears and panic for 40 minutes after the process but after the tube was in she was better and they were able to feed her food overnight through the tube for the next four nights at the hospital.

This is not the end of the NG tube though. Taylor has a BMI of about 15.5 which, by doing the math, puts her about 20-25 pounds underweight. Taylor pulled the GI tube out before she left the hospital that first week as planned but had to go back and put a 30 day tube back in herself and bring home a pump, this part I was definitely around for as my poor wife Michelle was terrified of going through the panic again with her little girl.

NG Tube Training for Taylor and I

So we went the next day for an afternoon appointment where a great nurse, Kathy, taught us the whole process. In about 20 minutes we learned all about how to put in the NG Tube, how to care for it to make sure it is inserted properly, and then Taylor got to put in her own tube. This is a very important process as Taylor always feels the need to have control over herself and by being able to put in the NG Tube she felt like she was in complete control over this part of her Kidney Disease.

The NG Tube insertion went a little slow but Taylor was able to get the tube in and was able to get it swallowed into her stomach and checked with no tears, no panic, and a sense of pride that she did it. Man, I was so excited that I was beaming with pride for her!

The next couple hours we learned about the pump that pumps in the food, the types of food, and the care of the NG Tube and cleaning. It was a lot to take in but we learned a lot and thanks to Kathy we felt very confident that we could do this ourselves at home.

Nestle Kid Essentials

Over the first month with this magical tube in (which still drives her crazy) she would eat and drink as she normally would, but the great thing is that at night while she is sleeping she is able to get a formula that is super high in calories and is mixed with water. This way she is able to finally get all the nutrients and liquids that she needs in a 24 hour period.

There are a few small maintenance things that we have had to get used to. Taylor has to check the tubes placement by pulling a bit of stomach fluid up in a syringe just before attaching the pump to her NG Tube, she has to flush it with water right after as well as the IV bag getting flushed with water. And she has to apply new bandages to her cheek to keep the hose in the right place. Not to bad and all this only takes a few minutes.

Taylor has since gone in one more time to change tube  just last week but over the last five weeks she has gained 11 and a half pounds which on her frame is an amazing accomplishment. She is getting a GI Tube put in on June 13th and that tube goes in through the stomach and does not have to be changed nearly as much. Should be a great lifestyle change.

One of the real reasons that I write this article is just to give some hope and confidence to parents out there that need to do the same thing that we just went through. The prospect of getting a tube put down your childs or even your own throat is a little fearful for anyone. You just have to trust in the doctors and nurses that have lots of experience with this and know the ins and outs of making it a little more comfortable experience.

Feeding Using an NG Tube, 5.0 out of 5 based on 1 rating

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Food and eating have always been an issue for me. I have at times been a few pounds over but always my exercise and metabolism have taken care of me. Food is a very emotional issue in our society, we eat because we are depressed, we eat when we are happy, parties are all about food and drink. I have been thinking a lot lately about my feelings and attitudes about food and thought that I would share them now as my slowly creeps up over the last few weeks.

My Own Eating Issues

I have always had a big appetite and a fear of a lack of food. I have never gone hungry, well maybe for a couple of weeks traveling in Australia when I lived on Mars bars and Coca Cola, but I have also eaten poorly very often. When I first moved to Calgary my wife and I were quite poor and she promised me that we would always have food, and we have. So I have to wonder why whenever I am packing for work I need about 3000 calories of food. I ride a bike to work everyday but that amount of food I put away is crazy.

When of the things that I believe that our body will do is adjust to the amount of food that we eat. If I eat a lot of food my metabolism will go up and if I eat very little food then my metabolism will go down. If I brought half as much food I am convinced that my metabolism would go down and my probably would not plummet.

So why with a proper thinking mind do I continue to eat so much?

I believe that there is still an emotion that fears hunger. I think that if I do not have a big bag of food beside me and constantly taking in calories that somehow I will suffer badly in some way. I bet I am not the only one with these emotions of fear of loss without food. Most people with a problem have that problem for one of three reasons, medical, probably only a few, eating to much, or doing not enough exercise.

If you are like me and worried that maybe you are eating to much food then maybe the best thing to do is understand that these emotions of starvation maybe at the back of your mind but at the same time make conscious decisions about what you are eating and when and as that candy bar or coke is going into your mouth try to remember that this food is not going to make you healthier, it has no nutrients but instead it is just a waste of calories that you are eating.

In one of the most rigorous studies ever conducted to determine how well people comprehend the information provided on food nutrition labels, researchers have found that the reading and math skills of a significant number of people may not be sufficient to extract the needed information, according to an article published in the November issue of the American Journal of Preventive Medicine.

So after seeing that report and of course precious little on what the problems really were that people had trouble with I thought I would pull out a box of Honey Nut Cheerios (They are for the kids, really I am not just right now popping them in my mouth as an evening snack) and a box of Kelloggs All Bran and am going to try to decipher what the lies are on the labeling.

A List of Food Labeling Lies

1. First of all we all need to know that labels lie. The best example of lying on labels is that PAM cooking spray is low in fat….It is all fat folks but the “serving size” is so low in actual grams of fat that the company can call it fat free or some ridiculous thing.

2. Serving Size – This is dumb but on the Honey Nut Cheerios it says that a serving is 3/4 of a cup or 30 grams I think because they want to use the fact that it is only 110 calories a serving (without milk, I tried to eat my cereal this morning with water instead and it was terrible), my Kelloggs All Bran says that a serving is 1/2 cup which is actually 36 grams. The difference in this case is that the All Bran wants to use the number of 12 grams of Fiber per serving so they decided that I should eat a half cup as a serving (I really eat about a cup instead in real life).

3. % Daily Value – Here is the worst part of the food labeling. There is a percentage Daily Value for Fat, Carbs, Cholesterol, Sodium and even Saturated and Trans fats but the numbers are not broken down on the box. Am I to assume that it is for and average sized man? Average sized Woman? It is a kids cereal so is it for a kid? What if you are following Atkins? Or the Zone Diet? How does this compare to Weight Watchers point values? I am really serious about this, as I look around the box no where does it say who and what kind of diet this is based on.

4. Percentages of Micronutrients – Here in Canada there is more stuff on the food label.There are also on this food label fifteen essential nutrients. These nutrients include such Vitamins and Minerals as Vitamin A, Vitamin C, Calcium, Iron, Vitamin D, Thiamine, Riboflavin, Niacin, Vitamins B6 and B12 (the un named B vitamins), Folate, Pantothenate, Phosphorus, Magnesium and Zinc and also display percentages of value using the secret code but I am under the impression that there is no real way to measure how much folate I need, how much is borderline deficient and how much is dangerously high. I think the jury is really still out on how much of each of these nutrients that we really need for sure.

5. Finally the food label on the bottom tells us what the product is actually made of. I am not sure why, but most of the parts of a lot of foods are unknown chemicals to most people. We have often heard that if you can not pronounce the ingredient then it is probably bad for you but I am not sure if that is really true and would love to know more about this.

6. Missing stuff – The one thing that I do see on one label and not the other is that there may be traces of nuts. As the father of a school aged child I know that many people have issues with nut allergies and there are other allergies such as Gluten and lactose that we only hear a little bit about but I can imagine those parents must pull their hair out trying to figure out whether a food is OK or not. I would love to se the food labels be a lot better at mentioning these things in the future.

I am sure that the FDA and the big food companies will never see this blog post but really I am sure I am not alone in wondering why food labeling is so bad in a society where people have to be careful of what we eat but hopefully as more people pay attention we will se changes to product labeling that will allow us to make more healthy and better decisions of what we should and can be eating.

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