That’s right. NO MORE G-TUBE. We are g-tube free!
Tommy had a checkup with his pediatrician last week and we again discussed Tom’s need for the feeding tube. We haven’t used it in about 8 months and that was only to give him some hydration when he was sick. We had a long spell of not using the tube but then he got sick and lost weight so they didn’t want to remove the tube then.
Well he recovered from that illness (he was sick all last November & December) and we have again enjoyed a long tube-free stretch. He hasn’t had any food from the tube in at least a year and a half. We have since made it through two bouts of colds with sneezing and coughing and have been able to keep him medicated and hydrated without using the tube. Learning to take medicines by mouth was another big hurdle but we can get it done. Gummy bears are a great reward!
Tom is still thin. However, all of the kids in my family are thin and Tom is no exception. Thank god they make pants with adjustable waistbands in them or Tom would never be able to keep a pair of jeans up. Though recently he has declared his preference for “soft pants.” Ah yes, every adult agrees that soft pants are how we’d like to live our lives, but sometimes we just have to wear real pants. Life is rough.
So Tom has gained two pounds since last year’s appointment but he’s still just clinging onto the growth chart at 1%. He eats. He eats a little breakfast at home and then gets another opportunity to eat a breakfast at school when he arrives. He has a lunch at school and then comes home to eat dinner around 5:00. He usually wants another sandwich or large snack around 8pm. We are always encouraging him to eat and drink.
Luckily, he is now a pro at going out to eat. For YEARS we didn’t go to restaurants because Tom could not and then would not eat anything at a restaurant. These days he can rattle off a dozen possible restaurant choices when he’s hungry. He’s very good at getting his grandparents to stop at his favorites: Chick fil A, Five Guys, or Applebee’s. Chicken sandwiches and cheeseburgers are his favorite things to order. We do a pretty good job of fitting in fruits and vegetables among those sandwiches. Luckily he loves cheese and will snack on that often.
He is making some calorie-dense food choices but he is also a very busy and physical child. He never stops moving and bouncing. And he has hypertone which cause him to be burning more calories even when at rest.
Yes, Tommy is a thin child but he is well nourished. His doctor agreed to remove the Tube because we just plain don’t need it or use it anymore. Tom eats 100% of his calories by mouth and can take any needed medications by mouth as well.
So last week I took out his tube and just didn’t replace it. I put a large Band-aid on the stoma and waited to see what happened. So far we haven’t had any leaking. The vomit-like smell of stomach juices is a dead give away and we have not experienced that. We will see what happens to the stoma site. I’m not sure what it will look like but I’m not super concerned about perfection there. I just want his stoma site to heal without having to put him under anesthesia for a surgical closure. So far it looks like he is healing on his own.
Tommy is g-tube free, finally! He had it for 5 years. What a wonderful Thanksgiving treat. We will be donating our stockpile of tube supplies to Global Links in Pittsburgh, a “medical relief and development organization dedicated to supporting health improvement initiatives in resource-poor communities and promoting environmental stewardship in the US healthcare system.