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Within a week her granulation tissue disappeared and she was a much happier toddler!
– Kennedy’s Mom
I’m a mom to three kiddos. I have two daughters, Kennedy (20 months) & Peyton (6 years), and one son, Bentley (4 years). My boyfriend also has an older daughter, Sophia (8 years), who is Kennedy’s 1/2 sister.
Currently, Kennedy uses the AMT MiniONE® and she loves it! Unlike some devices she’s had in the past, it gives her the freedom to do what she wants without having to worry about a feeding tube.
Kennedy has a few underlying conditions. She was initially diagnosed with Gastroesophageal Reflux Disease (GERD), Gastroparesis, and Food Protein-Induced Enterocolitis Syndrome (FPIES). Later, she also developed an oral aversion and reactive airway disease. Then, in February of 2017, she stopped eating altogether after associating food with pain. She was then placed with a Nasogastric (NG) tube. The NG tube tape came out when it was wet and also got pulled out all the time (Kennedy pulled hers out 1-2 times per DAY!). She still continued to refuse to eat enough calories to survive. At her May follow-up, her medical team decided that she needed to have a g-tube placed so that there was nothing in her mouth giving her yet another reason to not want to eat. She had the g-tube placed in July 2017.
Kennedy’s Interventional Radiology (IR) Team started her off with a PEG tube for the first 6 weeks. The PEG tube was bulky, got caught on things, and just made life really difficult. We then opted for a low profile button at her 6-week appointment once her stoma was healed. At the time, our IR team only carried the Mic-Key® buttons, so she had one of those placed. Within a week or so, she began having pretty nasty granulation tissue and even got a slight infection with the Mic-Key®. About a month after first having the Mic-Key® put in, we were back at the IR office having them “burn off” the granulation tissue.
A few weeks later, we had finally had it with the Mic-Key®. We had done our own research and learned that a lot of kids actually do better with the MiniONE®. We talked with the IR who actually had just met with an AMT rep the week prior. We were able to get an appointment with IR to place a MiniONE®. Within a week her granulation tissue disappeared and she was a much happier toddler!
For a while after her surgery, she had to have continuous feeds for 22 hours a day. We have since been able to work her down to continuous feeds 9 hours a day while she’s sleeping. Occasionally, we will have to do daytime feedings if she’s refusing to take anything by mouth that day. In that case, she wears her pump and backpack.
Kennedy loves to swim, play outside, go on walks, have dance parties in the house, and play with her siblings and her dogs! She also loves playing with her Bitty Baby doll that we sewed an old g-tube into. She will spend hours pretending to feed her through the tube and taking care of her.
