Keep it Simple
“So, we need to look into a G-Tube.” No parent and I mean NO parent looks forward to or wants to have “that” conversation. I have rarely seen it not met with extreme resistance and questioning. For some reason having to take this seemingly simple step in your child’s care opens a gateway to emotions and fear that supersedes anything else. SO, I want to open up the dialogue let’s talk a little what it means to be a “tubie”.
I want to first clarify that if you are in the middle of, or on the cusp of making this decision, the information I am about to provide is simply information to help you have a better understanding of feeding tubes and their purpose. I would consider myself a fairly intelligent person. I had a high SAT score, good grades, and can carry on a fairly intelligent conversation. However, when I was presented with the possibility of a surgical feeding tube, I must admit I felt extremely lost in the conversation. To me it felt like failure. Giving up. It felt like my team was giving up. I didn’t understand why we had to do something that seemed so permanent. Looking back on it now I have often joked that all babies should come with one. It wasn’t until someone put it in perspective for me that I could let go and willingly consider this for our daughter. You have heard of the brain body connection. We have all experienced it in some capacity. Whether that is nausea because you didn’t eat enough, feeling lightheaded after taking certain medications, or even a headache from a hangover. We often associate those feelings with our stomach. Our stomach is feeling those things therefore that must be the problem center and it is communicating that to our brain. Reality is actually the complete opposite. When those things go or don’t go into your stomach, your brain begins experiencing symptoms. It then sends signals to various parts of your body to stimulate them and you to try and alleviate the symptoms. Your BRAIN is what is struggling. In the same way if you are not getting enough nutrition through eating your body is not what directly suffers, it’s your brain. Your body shows the symptoms, of course, but the part effected the most is your brain. Your control center.
So, if your brain, your control center, is not working and is sending signals to your body that cause it to not perform at its best, how can you ever be successful? Seems logical right? The same is true for your child, eating, and growth. If your child is not able to get enough nutrition, for ANY reason, their brain is not going to be able to send the right signals to the body to do what it needs to do……. like chew, swallow, breath. Your brain HAS to HAS to HAS to have all the right things to learn to do these seemingly simple skills, along with other skills as well and gain appropriate strength. We typically don’t ever notice what is required for someone to move from eating as an infant, to toddler, and preschool years on into childhood. It is typically a natural process, if the brain is able to work and have all it needs. For so many kids with different abilities, something has stopped them from getting what they need the way they need it. And if they can’t get what they need, it is our job to equip them.
NG or NJ
The first step in equipping and appropriate intervention is an ng-tube, or an NJ-tube. NG and NJ stands for nasal gastronomy and nasal jejunostomy tubes. These are tubes that are placed down the nose through the back of the throat into the stomach or small intestine. Are you cringing yet? If you are its for good reason. As uncomfortable as it seems to talk about, is the reason that these are not considered long term options for a patient needing additional nutrition. It seems so simple to just put a new one in when it is needed with no anesthesia, no cutting, no “permanence.” After several weeks that tube begins to irritate the nose, the sinuses, and the throat and can cause tissue damage. It can become as uncomfortable as it sounds. If, however you have seen one of these work, but they are still needed it is time to further the conversation.
This is where surgically placed tubes should become part of the conversation. I could write a whole other article on the different surgical tube options, but for simplicity sake we are going to talk the difference in G and J and what “permanent” means when it comes to tubes.
G and J
G and J with tubes stand the for the same things in surgical tubes as they do in nasal tubes. Gastronomy tubes go from the outside of your body directly into your stomach. These are used primarily in a patient that is struggle with gaining appropriate oral nutrition (eating through their mouth). They simply need a superhighway to get nutrition into their body easily, so that they can supply their brain with what it needs to signal the body and help it grow the right way. This can be a game changing in all kinds therapy including and especially feeding therapy. Because if the brain is getting the appropriate vitamins, minerals, and calories, then it can strengthen and equip the body for the tasks ahead.
Now that you understand G and little better let’s talk J. J in feeding tubes refers to jejunostomy. This is a surgery that goes into the Jejunum which is a part of the small intestines. These are used for patients that for many reasons are having issues processing, or digesting the food introduced to their stomach. These are a little more complex because you are having to go through the stomach to the small intestine, directly into the small intestine, or have two tubes involved. This can be invaluable though, if your child is needing the nutrition like we have said before, but their stomach cannot handle it the right way.
No matter what kind of tube we are talking about it can be the most defeating feeling to feel like you cannot provide your child with a most basic need. This is where I tell you, “THIS is NOT your fault”. This is not a question if you didn’t do enough or if you have done more. By taking these steps if they are needed for your child you ARE giving them exactly what they need. You are providing their basic needs, just not in a conventional way. Is it a hard decision? Yes! Does it hurt often that you are having to make it? Yes! Is equipping your child to be the best they can be the wrong decision? No. Friend you are not alone. I know it feels it right now. I know you may feel terrified, but just know you are not alone on your island. We are here, we are listening, and want to help you love your child well.
The Motley Mom Life
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