River-Kai’s MiniONE® and MiniACE®
“It was like MAGIC! Literally, within days [of switching to the MiniONE®], River-Kai’s granulation started to disappear and within less than two weeks the granulation tissue was gone!”
River-Kai’s Mom
River-Kai was born via planned C-Section at 37.6 weeks weighing 7lbs 9oz.
From the start, River-Kai had feeding issues, he struggled to nurse and bottle feed. It took him over 50 minutes to take 2 mls from a bottle. The evening of his birth he had a very high respiratory rate of 84 and was taken to the nursery to be monitored. By 4am the neonatologist admitted him into the NICU as his respiratory rate was over 100. When I arrived at the NICU in the morning, the neonatologist told me River-Kai’s left lung was collapsed (pneumothorax). The odds of pneumothorax via C-Section is 1.53/1000 births.
River-Kai’s feeding issues were believed to be from the Pneumothorax. He wasn’t home from the hospital one week and his feeding issues were progressively getting worse. His inability to eat enough lead to a Pediatric Gastroenterologist and Allergist. He was diagnosed with Food Allergies, GERD, and constipation, placing him on medication at only a few weeks old. New or worsening symptoms were occurring daily. After his third visit to Peds GI, an Upper GI Series was ordered.
It was December 29, 2009 and River-Kai was having his first Upper GI Series done. Typically, not a long test, River-Kai’s test took over 4.5 hours. During the test he had several pain fits with balled up legs, screaming and then the calm after the storm as if nothing was ever wrong minutes before. When the test was finally complete, the radiologist pulled me aside asking me to bring River-Kai back the next morning to make sure the barium was out of his system. Upon returning and noting that the barium was out, the radiologist asked me to step into his office. He stated he was not diagnosing him, but he wanted me to know his findings as they could be what was causing River-Kai such severe pain. The radiologist contacted his GI and by the evening his GI called me who happened to be out of town. She recommended that I take River-Kai to see a surgeon because if something was wrong, a surgeon would know immediately.
The morning of December 30, 2009 I grabbed his medical records from our local hospital and headed to Orlando, FL to the closest children’s hospital approximately an hour or so away. We were met in the ER, tests were performed immediately and soon after he was admitted for prepping of emergency surgery.
River-Kai’s entire Mid-Gut (Small Intestines, Large Intestines/Colon and Appendix) were backward. He was born with an Embryonic Birth Defect of the mid-portion of his Gastrointestinal Tract. He was diagnosed with Mid-Gut Intestinal Malrotation with Intermittent Volvulus (layman’s terms, his small intestines were strangulating his colon, intermittently). River-Kai endured his first life-saving surgery at 9 weeks old, a Ladd Procedure and Appendectomy.
At 6 months old and countless tests for issues that never resolved after the first surgery (they were zebras to the first medical issue) he had an open procedure Nissen Fundoplication/GERD surgery, Pyloroplasty for delayed gastric emptying and a G-Tube put in for venting only. His first G-Tube was a Mic-Key®. The next month was spent in observation as feedings were intolerable, tube feedings were a necessity and introduced. Also, plagued by Dumping Syndrome, he was finally released from the hospital being fully dependent on tube feeding.
At about 15 months old I personally researched tubes as severe granulation made River-Kai miserable daily. No matter how aggressive it was treated, it always came back. I stumbled upon the AMT website. When I ordered his monthly medical supplies, I asked them to switch his button from a MIC-KEY® to an AMT MiniONE®. It was like MAGIC! Literally, within days, River-Kai’s granulation tissue started to disappear and within less than two weeks the granulation tissue was gone. Incredible to say the least.
At 2.5 years old, I received a long-awaited call from Cincinnati Children’s Hospital, Pediatric Gastroenterology, Hepatology and Nutrition Department. With his extensive complex history, he was accepted as a patient for Manometry Studies (a study of the nerves and muscles, mouth to anus). Manometry testing is invasive and painful, but it gets results!
The neurogastroenterologist met River-Kai and stated, he looks fine and that he probably just has a feeding disorder. I told him I was there for the test, not his opinion. Two weeks after the test, I received a call from the neurogastroenterologist, he stated he was wrong for assuming he just had a feeding disorder. The Antroduodenal and Colonic study showed that neurologically, River-Kai’s stomach did not work nor tolerate food.
Several months later…a little over 3 years old, he was transitioned to the AMT G-JET® to bypass his stomach. The G-JET® stopped his Dumping Syndrome completely and allowed him to advance his feeding mls per hour.
On July 30, 2014, River-Kai had an appointment at UF Health (University of Florida) with a pediatric surgeon. River-Kai was a candidate for a GES (gastric electric stimulator).
August 20, 2014 he started the GES TRAIL which lasted 12 weeks. At 4.5 years old, he consumed more than just one bite of food without pain, he consumed an entire hotdog! November 25, 2014 the GES was permanently implanted into River-Kai’s abdominal wall with leads extending to the back of his stomach. With this added device we were able to switch back to the MiniONE®, which was a big deal for us!
Jump years ahead…October 2017 after new Manometry studies in his colon for Slow Transit Constipation. River-Kai’s test showed he was a candidate for a Cecostomy Tube/Antegrade Anema. The first 8 weeks he had a MIC-KEY®…HELLO GRANULATION! At his post-op visit months later, his physician selected the MiniONE® as his new C-Tube, which is an off-label use of the device. (AMT now offers a low-profile antegrade continence enema button, the MiniACE™).
Months later… on February 11, 2018, River-Kai was rushed to the OR for his second life-saving surgery (9 days post-op cecostomy surgery). Unfortunately, abdominal surgeries even the most minor can cause adhesions. River-Kai had a High Grade Closed Loop Small Bowel Obstruction by adhesions that were intertwined within his bowel loops. He had several micro-perforations in his small bowel, his descending colon and bowel were completely collapsed, he was in Metabolic Acidosis and the odds of survival were extremely grim.
River-Kai PROUDLY ROCKS TWO AMT Devices the MiniONE® and the MiniACE™!!
AMT IS STUCK WITH US! I recommend AMT PRODUCTS to any parent who complains about granulation.
Many GIs and surgeons have complimented on how beautiful his stoma is. A few have made it known that they’ve never seen a stoma look so good. I owe that to AMT for such a great product geared towards a pediatric patient in mind.
PRESENT UPDATE:
River-Kai still gets 800-1000 mls of his daily calorie intake via tube feeds. He was diagnosed with PTSD from Chronic Medical Trauma. In addition to seeing a trauma therapist and full medical clearance, he started training Brazilian Jiu Jitsu (BJJ) as part of his trauma therapy. The low profile of the AMT MiniONE® helps him train comfortably, as BJJ is grappling/combat ground fighting.
River-Kai is 9 years old and a true warrior!
