Pfeiffer Syndrome Part V- G-TUBE
Caliyah’s gastrostomy tube, aka g-tube, is not something all Pfeiffer Syndrome kids need, but she received hers at three months of age due to her airway issues. There are over 300 conditions for why kids need a g-tube, and about 300,000 kids since 2017 are receiving food via a g-tube. Her small jaw and enlarged tongue create a blockage in the back of her mouth, not allowing her to swallow with ease. Taking food by mouth can be very problematic if it goes down the wrong pipe and enters her airway. The biggest reason she had her g-tube placed is to make sure she receives all her nutrients to grow and thrive. Many kids get a g-tube placed due to failing to thrive. It could be a structural or developmental reason they can’t receive all food by mouth; it is mainly structural for Cali. To avoid those issues, she has received milk through a feeding tube since day one to ensure she receives all her nutrients and protects her airways. In the early days, her feeding tube was placed through her nose and into her stomach. Her doctors told us early that she would get to a point where she would be irritated by the tube, and a g tube would be the next step. Just like clockwork around three months, my little one started pulling her tube out of her nose and become very agitated when it was time to replace it. Once she got her g-tube, you could tell she was way more comfortable, but it also comes with training and a new lifestyle.
When people see her g-tube, I always get asked…
Will she ever eat by mouth?
The answer is yes. She is already taking some food by mouth! Once she has her monobloc surgery, it will create more space in her pharynx back of her mouth and allow her to a majority of food by mouth. This surgery will ensure that food will go down the right path and not accidentally down the wrong pipe. Also, like some preemies, Caliyah hasn’t built her sucking muscles. She is behind in her oral skills, so we have to activate her mouth muscles. We have various oral exercises we take her through to develop those muscles, engage her tongue, and prep her for solids foods and chewing. Her recent surgery has allowed her to gain motor skills and start to swallow.
How does the g-tube work?
Caliyah's g-tube is inserted right into her stomach and uses a small balloon blown up on the inside to prevent the g-tube from coming out. On the outside, she has a tube extension with a port that allows us to push or let food flow into her stomach. In the first six weeks, we used a machine to mechanically push breast milk into her stomach, about 80ml over 30 minutes. Over time we moved to gravity feed, which allowed the food to flow into her stomach by hanging her feed bag at a level to let gravity do its job. After every feed, we flush her tube out with water to make sure we don't leave any excess milk in the tube. She receives all her medicine through her g-tube.
What are oral exercises?
Your tongue is considered a muscle, and just like any part of your body, the less you use it, the weaker it gets. So with Caliyah not using her mouth to receive food, it lacked the ability to do everyday tasks such as suck, swallow, and more. Also, by not taking food by mouth, she lacks taste buds and receives the immunity benefits she would get by orally receiving milk. To build the muscles in her mouth, we use breast milk and put drops in her mouth while using a toy to interact with her tongue. We develop tongue lateralization by getting her tongue to follow the toy left and right and retract her tongue.
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