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We very quickly switched over to the AMT MiniONE® after our GI RN suggested some people prefer it. Her stoma cleared up right away and we have never had granulation tissue since.
Cora’s Mom
Cora is fed 24/7 via her J port and vented/drained via her G. She has Gastroparesis, Pseudo-Intestinal Obstruction, Congenital Intestinal Motility Disorder and suspected Mitochondrial Disease. She utilizes the Infinity Pump and is a very active, otherwise normal, 3 year old girl who runs, jumps, climbs and tumbles. She has 2 sisters, aged 5 and 15, and also 2 dogs and 1 cat who love to wrestle and chase her. She knows no fear and loves to play. She loves to go down the slide backwards and head first, any which way but feet first. Without the low profile of the AMT G-JET®, I can guarantee we would have had several buttons being pulled out and her GJ getting spun around, pulling the J out of place resulting in a change. One time, our dog actually got her feet caught up in the tubing mid-run and the extension tubing and tape pulled out, but her G-JET® didn’t budge at all. I was so relieved, I almost cried.
I love that she is a very active girl, but it always panics me because she does have some intermittent muscle weakness that can hit at any time. She falls down stairs, she falls into doors and walls when her legs give out or hands can’t hold on. Because this button is so low profile, it has never gotten caught and because I can arrange the tubes in a million different ways, they don’t get caught or tugged on by her clothing or whatnot.
Cora originally was placed with the Bard® Non-balloon low profile button, which truthfully was wonderful. However, it became stuck to her abdominal wall and it was replaced with a Mic-key® g-tube balloon button. She IMMEDIATLEY experienced extreme granulation tissue, red and peeling skin in a circle the exact size of the button around her stoma. We very quickly switched over to the AMT MiniONE® after our GI RN suggested some people prefer it. Her stoma cleared up right away and we have never had granulation tissue since.
Later, Cora had a full gastric shut down and was on TPN. Her Pediatric Gastroenterologist wanted to switch her to a GJ tube and happened to have an AMT G-JET® in the right size in his office, so he placed it to help get her off of TPN. I was terrified at how large it was in comparison to her old G-tube and that it would be changed every 4-6 months which involves interventional radiology. We quickly discovered that while she now had a G and a J, the shape of the AMT G-JET® makes it almost more low profile than her AMT MiniONE® G-Tube. Securing the tube to her stomach is so easy with the 4 sided design, the 4th portion of the tube that lays on the stomach makes for a great second place to anchor the tube without covering the G or the J.
Cora loves to help vent her G-JET® and help give her meds via the J port. She could not access the side port on the Mic-Key® GJ at the hospital and was very upset she couldn’t give herself her meds. She even made sure the nurses were aware how upset she was. She now helps direct where she would like the extension set to go on her tummy. Because I am able to secure her G-JET® to her stomach so well, I can let Cora spend most of the day carrying her feed set in a purse type bag which she carries by hand to give her back a break. Recently, I have been trying to train my mother-in-law to be a back-up for Cora’s care. Cora really wanted to show Grandma what to do, but it is difficult to show someone how to clean the stoma, put on her button pads and tape it all down just right. Cora now has an AMT Teddy Bear with a G-JET® so she can help show Grandma!
Our first couple of G-JET® changes went so quick that our IR Doctor suggested we try using just Versed (a drug used to produce sedation and to relieve anxiety for procedures) for her next change. Cora has horrible reactions to anesthesia, so we spend more time recouping from the anesthesia than from the procedure itself. Her Doctor said the G-JET® was so easy to place that we gave the Versed a try and she was done in 10 minutes. We spent no time at all in recovery and we went home 5 minutes after she was done. It was just wonderful!
We later had one experience changing her G-JET® where the wrong tube was ordered. Our hospital stocks and standard orders Mic-Key® and Bard® products, so our AMT G-JET® is a special order. She was accidently given a Mic-Key® GJ and immediately developed granulation tissue and her stoma began leaking so bad that we had to stop feeds for 3 days while we waited for her correct AMT G-JET® to be overnighted. She had to be hospitalized for Peripheral Parenteral Nutrition (PPN) while we waited. As a result, we now have only 1 Doctor and 1 Anesthesiologist who change her G-JET®.
The AMT G-JET® is indestructible. We try to reduce Cora’s exposure to x-rays, medication, hospitals and doctor’s offices. Her last G-JET® button lasted 9 months. The only reason it was changed was because we thought she might have twisted it out of place accidently. Also, her GI was moving to another hospital, so we wanted to make sure this change went smoothly and ensure there were no mistakes with ordering and placement. Otherwise, her G-JET® was still working just fine and had no other reason to change it. All of the doctors were very impressed at how well it had stood up.
