Monday Ben is going to get the NG tube. He is not gaining and in the last few weeks is barely eating 1/3 of what he should be. On top of that, his vomiting episodes have been worse.
His GI doc doesn't want to do the G-Tube right away because of his history with CDH, so he is going to have an Endoscopy and NG tube placed at the same time.
My question is how does your toddler do with being taped to their face? He is 20 months, and I am having a hard time figuring out how to get him to leave it alone, especially at night when he is alone in the crib. I am afraid he is going to play with it, pull it out etc. He is going to spend the night in the hospital after it is place, so we can learn to use it, but he will be home the next day.
Re: NG Tube
Hey KathW
I'm sorry you're still struggling with Ben. I hope the proceedure goes well and that everthing works out. I have no advice about the NG tube, but just wanted to pop in and let you know I'm thinking of you.
sorry you have to deal with this! Let me start by saying that he WILL pull it out. It will happen. They will hopefully teach you how to put it back in so you don't have to go to the office/ED each time.
I find that running the NG tube down the back of his shirt and actually taping it to his back helps. That way if he is playing with the tubing from the feeds and pulls it, it pulls from his back, not his face. As far as taping it to his face, it helps if you put a skinny piece of tape around the tube very close to his nose, and then using that same piece of tape, tape it to his nose, as well as taping it to his cheek, as close as you can get it so there is no loop from where it comes from his nose. you may have to try some little socks over his hands the first few nights to make it harder to grasp the skinny tube.
I've been a PICU nurse for about 7 years. By far one of the most frustrating things is trying to figure out how to keep things where they are supposed to be, and away from curious little hands! good luck!
Katherine,
I'm sorry that it had to come to this for Ben. You have worked so hard and have done everything imaginable to keep up his nutrition, you should be proud of your strength! Not many momma's could handle all you have gone through!
I will keep you and your family in my prayers through the up coming weeks. Please let me know how you make out with the NG tube... I am very curious as we may be facing similar issues in the next few years!
Erica (Isaac's Mommy)
Thank You! I will remember this, and stock up on tape!
Thanks for the good thoughts english, we certainly need it! How is your little girl doing?
My son has an NG stent that goes in his nose and comes out his G-tube site. It is just there to keep his esophagus from closing on itself and to aid in esophageal dilations.
The biggest problem we have is the skin irritation caused by the tape. Drake is always trying to scratch under the tape which pulls it loose from his face and then he makes himself bleed. We have tried so many different kinds of tape and so far the paper tape works best because it breaths more. He still breaks out but at least some air can get under the tape.
Good luck! I hope the NG helps your feeding issues!!