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Wednesday, July 27, 2011

G Tube

So we are going ahead with getting Carter's G Tube, we will hopefully be doing it this month.  We saw the GI doctor today to see if he was a good candidate.  He has not gained any weight in 4-5 months; he was in the 50th percent for height, but is now at 25%.  He was about 25 percent for weight, but is not 10%.  He has obviously declined, because he isn't getting enough calories or fluids.  This was in a way relieving to me, to know that we are on the right path.  He is no longer eating any food except some pudding.  He is just drinking bottles for his 3 meals, but even that he isn't getting enough.  He should drink around 30 ounces a day, and he does about 17-22.  Because he is so sedentary and doesn't move much, it has kept him hydrated well enough to this point.

On Monday we are going in to have a barium study done on his insides, to see how big everything is and how it's lined up.  This needs to be done before the procedure, because we are choosing to do a PEG.  This is a shorter procedure, where Carter would be sedated, then they would pass the endoscope through the mouth and into the stomach.  The position of the endoscope can be visualized on the outside of the patient's abdomen because it contains a powerful light source, like a flash light.

How it's done:  A needle is inserted through the abdomen, visualized within the stomach by the endoscope, and a suture passed through the needle is grasped by the endoscope and pulled up through the esophagus. The suture is then tied to the end of the PEG tube that will be external, and pulled back down through the esophagus, stomach, and out through the abdominal wall. The insertion takes about 20 minutes. The tube is kept within the stomach either by a balloon on its tip (which can be deflated) or by a retention dome which is wider than the tract of the tube.

He would just be admitted for one night, and recovery would be quite quick.  After around 6 weeks, they would place a button on it for less visibility and easier management.  So the first while he would have a tube coming out, that we would tape to keep it away.  We will update you once the surgery comes and let you know how it goes/went.  Thanks for all those who have supported us, left beautiful comments here or on Facebook, or even those that just read because they care.


  1. Quite the trooper you are and so is Carter! Isn’t it interesting how we pick up and learn so much about something that if we had not been thrown into the situation, we wouldn’t even wonder about. In not time at all, you may certify as an expert in the field!! Go Carter, go! We love and support you all! I put Carter’s, your name and Chris’s on the Temple roll yesterday at the Salt Lake Temple. Hundreds will be praying for your family for the next two weeks. Maybe you could document the small blessings you see during that time! I know the Lord is keenly aware of you and your trials! Love, hugs and kisses!

  2. Good luck, little Carter! We'll be thinking of you. I'm glad they make the procedure as simple as possible and can get him home after just one night.

  3. Thanks you two! It is scheduled for Friday, September 2nd.

  4. Will you then have special ways of feeding him, but he will still poop and pea as usual? How does feeding a child with a gtube work? I really enjoyed the article you sent from the Ensign. I can imagine you have felt very similar things and go up and down on things with each new challenge. I hope the tube is an improvement for you and your family.

  5. Alena, he will be fed mostly through his mouth as usual if he will. Then all fluids and medicines will go through his stomach, which is the G Tube. I will learn more at a class later this month. He will still have bowel movements and such as usual, since he is still getting nutrition and fluids. It is just bypassing the throat and going directly to the stomach. It will be a special formula that we will feed to him through the G Tube, like a tube going in the stomach.

  6. The reason he can't have fluids normally anymore, is because he aspirates them and coughs a lot. His muscles aren't strong enough to drink things like he should. He can still eat okay, but we'll have to keep an eye on things.