August 11, 2022

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 me 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 8 and 12 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 Children’s 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.

This led to a hospital visit AGAIN a little over a month ago and one of the Nephrologists at Alberta Children’s 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.

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
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 our 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
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 child’s 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.

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