The Case of the Missing G-Tube

Ashley has a G-tube - a tube that has been surgically inserted into her stomach so that she can be fed through it. She got the tube inserted when she was just two years old, and was refusing to eat or drink anything. At age two, she weighed only 12 pounds. The G-tube was a blessing! Although I was extremely hesitant at first to have one inserted (because I was afraid I couldn't take care of it and her), it has made all the difference in the world for her. She is now in the 75th percentile for her height and weight (at age 11), and is overall pretty healthy. She doesn't get food through the tube anymore because after 9 years of feeding therapy at our local Children's Hospital, she has learned to eat enough to sustain her health. But she does use the tube for medications. She has to take a lot of medications and getting her to swallow all of them would be a constant battle - a battle neither she nor I need. So, the G-tube is still very much needed.

When Ashley goes to school, no one really has to deal with the G-tube. She doesn't have to take any medications through it during the school day. The only thing the school staff has to do is remain vigilant that the tube doesn't accidentally get pulled out. Since there is an inflated balloon in the stomach which keeps the tube in place, having it pulled out would not be an easy task. If Ashley were to get it caught on something or if she were to try to pull it out herself (which she has only done once many years ago), it should cause enough discomfort that any adults nearby would notice something was amiss. Which is why I don't understand what happened at school on Friday, May 19, 2006.

When Ashley arrived back at her daycare at the end of the school day, she was assisted off the school bus by her personal care assistant. The assistant drove Ashley to our home, and Ashley was immediately taken to the restroom where the assistant noticed that Ashley’s G-tube was missing.

The assistant called me and reached me on my cell phone as I was driving home from work. I advised the assistant to cover the stoma (the hole into the stomach into which the G-tube is inserted) with a clean cloth and not to feed or give Ashley anything to drink (because it could leak out of the stoma or hole).

I arrived at home, prepped a new G-tube that I had at home, and prepared to insert it into the stoma. Although the new tube had been properly prepped (meaning thoroughly lubricated), inserting it into the stoma was very difficult and caused Ashley a lot of pain. The stoma had begun to close up from the inside of her stomach, indicating that the old tube had been out for approximately 1-3 hours.

I immediately called the doctor and took her in. The doctor had to forcefully insert the new G-tube, again causing Ashley pain as well as bleeding. Ashley required over the counter pain relievers that evening as well as the remainder of the weekend.

On Monday, once school was back in session, I wrote and faxed a letter to the School district Superintendent

I also had written and sent in a note to Ashley's teacher informing her about missing G-tube and requesting an explanation. Later that morning, I received a call at my office from Ashley’s teacher saying that G-tube was present when Ashley left school. She surmised that Ashley must have pulled it out sometime after school was dismissed.

That afternoon, I received a call from theDirector of Special Education stating that the Superintendent had received my letter but was tied up in meetings all day. The Special Education Director also stated that the missing G-tube had been found on the school track. Ashley and her classmates had been walking on the school track 30 minutes prior to school dismissal.

Ashley arrived home that afternoon with a note from teacher stating that the G-tube had been found and asking if perhaps the G-tube could have been defective. The teacher also stated that two adults had been beside Ashley the entire time she was on the track and neither had seen her even touch her G-tube.

Hmmmmm...And these are the adults who are in charge of my child's safety during the school day.