The presentation that my daughter is giving has been postponed to this week due to the 1st week back to school fire drills and other important things they had to do during the 1st partial week. However, she loved the questions you all helped come up with for her and she has come up with answers and wanted me to share with you all. The questions and her answers are: Questions about Feeding Tubes Does it hurt to have your tube changed? • No because my doctors always give me sleeping medicine to knock me out. Then they change my button and I do not feel anything. How does your doctor change your tube? • On days when I get a new tube, I wake up and don’t get to eat or drink anything. Then we get ready to go by bringing fun stuff to do. I bring my Mini Buddy and favorite toys. I have to get IV’s which I HATE. Then I pick the smell for my stinky sleeping gas. Next thing I know I am done. (Her feeding tube changes are done in the IR or Interventional Radiology room also known as the small OR/Procedure room with the active X-Ray room while she is fully sedated with a full team.) How does a feeding tube work? • My feeding tube has to buttons next together. One goes in my tummy, one in my intestines. The tummy one or G-Tube, helps with venting. The intestines one or J-tube is for my milk. Have you ever been able to eat real like us? • No because I have lots of food allergies and I react to lots of food. And when I was a baby I could not swallow right because of a hole in my throat. My hole or Laryngeal Cleft made me choke all the time. (The Laryngeal Cleft is like a cleft lip but deep in the throat and instead of keeping the food in her esophagus, it was allowing food and liquid into her lungs. Due to this she was always sick as an infant and toddler.) What do you miss most? • Shrimp, special ice cream, cereal, corn, and cake, bananas Will you ever be able to eat like we do again? • I don’t know What are your favorite foods? • Rice chex, Rice cakes, Rice, apples, chicken, pears (The foods we know for sure that she is very allergic to are Cows milk (all forms) soy, corn, peas, and peanut butter.) Do you get sad when you can’t eat? • Yes. I get angry sometimes because I miss food What do you do during meal time when you can’t eat? • Read, play with my fake food, play with my American Girl Doll, sometimes play video games Why did you get your feeding tube? • When I was a baby I was really sick and was not growing or gaining weight How old were you when you got your first feeding tube? • A tiny baby Have you ever had ice cream? • Yes, mom found a special one that one store carried in Colorado. But, I never really ate any. I just smeared it all over my face. Now I cant have that one because it has corn and soy. Do you ever get hungry? • I only get hungry if I am not wearing my pump for a full day. How does your feeding pump fill your up? • Whenever I have my feeding pump on, it fills me up because it always fills me because it is always filling me up. What happens if you eat to much food? • I get sick and I vent (or throw up in a bag) all the food) and sometimes all over my bed or the floor. What would happen if you ate… (peanut butter) or drank …(milk)? • I would have to go to the hospital because I would get so sick so fast. Can you swim with your feeding tube? • Yes I can, but only if my pump is off. Because my bag will get soaked in water. My pump is not made to swim with. Can you play sports with a feeding tube? • Yes, but if I did I would get so tired so fast or sick so easy so I dont. I also get to hot or to cold very easy. Does your feeding tube or milk freeze in the winter during recess? • No it never freezes. Because I warm it up with my own body heat. If that ever happened that would mean it was really really cold out. (she answered this one through a fit of giggles) Is having a feeding tube ever scary? • It can be. I found out I was allergic to another kind of feeding tube. That button made me hurt a lot and gave me infections.
Posted on: Tue, 02 Sep 2014 16:14:03 +0000
Trending Topics
Recently Viewed Topics
© 2015