Anyone else here have a g-tube dependent child?

[Delaney21]

Mitchell, 17 months, has eosinophilic gastroenteritis, so he is essentially allergic to all food. He has the physical ability to eat and drink, but refuses to drink enough quantity to sustain him and we haven't found any foods he's not allergic to. He'll drink maybe 4-5 ounces a day by mouth, and he eats ice every day to try to keep his eating skills up.

Mitchell received a NG tube when he was 12 months old and we upgraded to the g-tube 6 weeks later (January 08). For us, the g-tube has been a blessing. Prior to it, DS was slowly starving to death and now he is happy, thriving and healthy. He has gained 7 pounds in 4 months!

He gets 4 oz bolus feeds every 4 hours during the day and he's on a 10 hour continuous feed overnight. We have the Zevex Infinity pump with the super mini backpack and he loves to wear it around so it has made traveling and outings a lot easier!

Challenges:
Planning ahead to make sure you have enough formula when you leave the house in case you get caught in traffic, caught at the doc's office, or for when he's hospitalized and the hospital runs out of his formula. He was BF prior to the tube, so I never had to worry about having enough available.

Being the crazy mom that doesn't feed her kid

Perks:
We don't have to worry about him throwing food around the kitchen when he's eating like most toddlers He's easy to clean up after.

I don't have to worry about getting him to take crappy tasting meds because his tubey doesn't have taste buds.

[lissa2061]

My son Evan had an NG tube for 14 months and a G-tube for a year. His eating issues were a result of his heart defect. He just did not have the strength to eat for long enough to get a full meal. He had pretty small stomach capacity, so that was our biggest hurtle in getting him 100% oral fed. Now that he has had his surgeries and his heart is working a lot better it is nice to see him chunking up.

[rwooley]

My youngest DD Brooke 15m has a Mic-key button and has had since she was 3 1/2 m old due to sever reflux and failure to thrive. We did cont night feed for about 6 m and recently we were able to stop that. I know what you are dealing with is hard and scary. Your little man will be in my prayers as will you and your family. I wish a speedy recovery and Im here if you need to talk or have any questions!
Brooke is totally eating by mouth now, Praise God for small steps! We use the button to burp her, she had a fundo done as well. She has a seizure disorder and Sesory progression disorder!
Gpd gave you a very special little guy! He picked you to care for this little man, he knows you can handle it! He is going to be just fine!