Feeding Tube (Refusal or Not)

S.-

First HUGE (cyber hugs).

My daughter had a feeding tube since birth til about age 8 ish.

She was a preemie with cardiac issues as well. She was very high risk for the surgery, and it was a very hard choice to make. BUT, in the end, was life saving. She had the 'nissen' along with the tube placement to prevent aspiration.

Once she was home from hospital, we did EVERYTHING we could to try to get her to eat by mouth (with the exception of an in patient feeding program).

Finally, I backed off. We sat her up at the table with same dinner as sibs...and focused on the social aspects of eating. We switched the tube feedings to either ALL night...then tried the tube feeds during the day to coincide with meals in the hope she would 'feel' hunger...nothing seemed to work.

For her, the light bulb finally went off...of course in our case, no known allergies.

She is almost 18 now, but when we were struggling before she finally 'ate by mouth' enough to sustain and gain, several hospitals in the area had developed some out patient feeding programs...perhaps you could look at a children's hospital in your area?

With respect to a feeding tube...they are really not hard to manage at all. If your daughter is developmentally on target, she can help with the management of the tube as well.

I am happy to answer any questions I can...if you would like, feel free to PM.

A feeding tube can be literally a life line...but, I really understand your concerns.

I wish you and your daughter the best!

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Geesh, I just went back and looked, and you have had this concern/issue for a while! I did ask my daughter's twin, and she was about 11 before she really ate by mouth enough to sustain. I truly hope you make a choice for your kiddo...it is clear you have been debating this a LONG time!

It is hard...however...treading water has little forward motion!

please PM...I invited you to do that last time as well...

(((HUGS)))

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Just so you are aware I understand ALL of the options...a 'g' tube goes directly into the stomach...and one does have to be concerned with regard to 'volume' of feeds...and timing...it is EASY to manage...especially if it is a high calorie per ounce formula.

A 'j' tube goes directly into the 'jejunum', and bypasses the stomach...and MAY be an option for a variety of reasons...not mentioned by this poster.

Something directly INTO the bloodstream (such as a PICC line) is typically the LAST thing considered. It is invasive...has HIGH risk for infections...and screws with blood sugar levels.

Just wanted to clarify.

Have nothing to offer but love Felinestroller's answer. My best to you. It has to be hard. Huge hugs sent your way....In my VERY limited understanding, it seems you have no option. You guys WILL get through this....

I'm so sorry you're daughter, and your family, is going through this.

I've always heard when it gets to this point that having the feeding tube is essential. The feeding tube might make it easier for her food to digest it.

There are many kinds of feeding tubes. If they do the stomach it could still cause her reflux problems and if they do it directly into her lower GI then I think it might cause either constipation or diarrhea. But I have no experience with that and wouldn't know. If they did it directly into her blood maybe that might be best, to bypass all the other places that are hard for her.

I hope you do the tube so she can get better.

I answered this question before. My husband has had a g-tube for over 3 years. It is really no big deal and it is keeping him alive and healthy! It seems like a no-brainer in your little one's situation. She needs more calories. Why would you refuse the tube?

Think about getting a bed with a head that raises. She will need to be at least at 30 degrees to avoid reflux.

If you look at it this way.... with the E0E (Eosinophilic Esophagitis), it hurts to eat, basically.... her esophagus swells with certain triggers, including food allergies.

So.... basically, it hurts when she eats.... so, in her mind, if she doesn't eat, it doesn't hurt!

Get her the feeding tube.... she needs it to be healthy!

I don't understand why you would not follow recommendations from the Dr. so that your daughter can possibly get better.

If you are not comfortable with your Dr., PLEASE go get a second opinion but don't let your little girl suffer.

Like others have said, a tube is often the life line someone needs.