Feeding Tube (G-tube)

I work with g-tubes. I understand it's a scary idea, but I think you'll be so relieved once your kiddo has one. Imagine no more fighting, cajoling, etc at meal times. No more worries about getting adequate calories into your kid.

The sugery itself is fairly minor, especially if they place the "mickey" button right away. If you all are going to be inpatient, be sure to ask your nurse for pain medicine every 3.5-4 hours. Pain is easier to control if you treat it before it gets bad. And if you all will be at home, be sure to give your kiddo the prescribed pain meds as often as you're allowed.

If your kiddo will be fed via a pump, the home health company who supplies the pump will come to your house (or the hospital, if you're inpatient) and teach you how to use it. All the pumps are basically the same, and trust me, they're idiot-proof.

The Mickey button is totally inobtrusive; no one will even notice it under her clothes.

Good luck!

My husband has one because of a major stroke he suffered 2 years ago. I, too, was worried when it came time for him to come home from the hospital and have me care for him. After a few days it became so routine, I could do it in my sleep (and practically did. I was sooo tired).

The good thing is that she is old enough to be told and understand not to pull on it, etc. I could see where it would be tough with a little one. If it does come out, don't panic. My husband accidentally pulled his out. We went to the ER and had a new one put in and it was no big deal.

I can't really help you with the surgery part of it. That details of that time period in my life can be a bit blurry. I do know that it was much better than when he had the tube in his nose!

Good luck to you and your family. My husband gained at least 20lbs on the formula (and we didn't want him too!) Please know that it really isn't as tough as it seems. Ask plenty of questions and don't be afraid to call as things come up. You can message me, also.

Added: As far as pumps go, we preferred to just use gravity bags (no pump, just a bag that drips with the help of gravity). The pump we used had an alarm and was really loud and obnoxious. At one point it frightened him while sleeping. He tried to get out of bed to turn it off, forgot that he could not walk, and fell.

Hi S.-

My daughter had a g tube from birth to about eleven years old. As angie said, once healed, they are very unobtrusive. For shannon, I merely kept a bandaid over it when not in use. Eventually she had a feeding pump that was very small, and came with a knapsack so she could wear it if there was a need to.

If she has a 'button', it is very easy to manage if it falls out. You always have an 'extra' button on hand...and merely put a new one in...and re inflate the ballon that holds it If you cannot slide a new one in (or get the old one back in if you have no spare) then a trip to the doc will be necessary. (By the way, I only had to go to the dock one time in 11 years).

It seems very scary at first, but I assure you it is easy to manage! Please private me if I can be of any help!

BTW, for my daughter, the 'eating light bulb' just went on! She was never expected to eat 'by mouth', but we always sat her up at the table, and gave her a plate of food. We would often run a feeding with the tube at the same time hoping she would associate eating and 'feeling full'. Anyway, after about 6 months of backing off the feeding tube...and counting every calorie she took by mouth, we dc'd the feeds. Now she is one of my BEST eaters!

I wish you and your daughter great success as well!

My friend's daughter had G-tube for several years, beginning around the time she was about 3. Since my friend had no family in the area (& her then-husband was a non-involved jerk), it was pretty much up to her, with as much support as I could give. Yes, at first it was very scary because we'd never seen or done anything like this before. As others have said, it really becomes second nature! Soon, I was able to fill in for my friend and set up the night feedings when she was out. Easy peasy.

Don't allow your concern to consume you because then it's too hard to take in information, ask questions, and allow yourself to feel relief. Sometimes, hospital staff and visiting health care professionals step quickly through the routine because it's second nature to them & not a big deal. Ask them questions (obviously, in a pleasant, "asking for help & understanding" tone, rather than a "I don't know what you're doing & I don't trust you" tone). Ask them to explain & show you, step by step. Ask if you can do it while they watch & instruct. Building that muscle memory will help when you're on your own. Ask "what if..." whenever you can.

This is scary to start, but will be a terrific boon to your daughter & your family. Focus on that excitement rather than the fear. You can do this!

One day of discomfort and then once healed she won't even know it is there. I have had one for 23 years. Very easy to take care of. A good group to contact is The OLEY Foundation. What an incredible group of people. They are an educational and support group for kids nd adults who are fed via an IV (TPN) or enteral feeds. They have conferences that are awesome. Lots of children's programs. Definitely worth contacting them and getting on their newsletter mailing list. They truly are a lifesaver. Kids then realize, they are not alone.

My husband had a g tube for a year after a small bowel transplant it was not a problem after the first week. I second getting in touch with the Oley foundation. We have been involved with them over 10 years. Fantastic organization. You will find a community of others who have similar challenges in life...so helpful to make you feel that there are others who get what you are going through and they are great for offering support and comfort. Great support for the entire family.