Been there, done that
What is your advice for those who are faced with the decision to tube feed or are new to tube feeding? Share your knowledge and experience to help others!
Today’s topic was a logical decision but very hard for us to say out loud.
Like I have blogged before, I never would have imagined we would be at the point we are now. Our road seems to be turning into dirt as I type. A little Tinleigh update – she’s recently had some food impaction and is back to choking often. Not good since we have removed all foods she has tested positive to plus some. We don’t have high hopes for her next scope, which may result in a tube for her as well. Few extra prayers for Tinleigh if you don’t mind.
Back to the topic
The decision of getting a feeding tube can almost be a selfish one for the parent. It can go either way too. Especially with the allergy kids. A parent can say yes give my child a feeding tube then I won’t have to worry about cooking all these special meals for them. Makes me sick to my stomach to type that out. A parent can also say no you will not put a tube in my child I would never do that to them. (guilty here) Which may result in poor nutrition and poor growth.
When considering a feeding tube for your child you must think about your child’s health.
A child’s body is made to grow. It is your job as a parent to help them do that in a healthy way. If your child is falling on the growth charts it’s your job to get them back on. Their little brains are developing as well. If the nutrition isn’t there, then their brain can’t develop as it should be. You need to get your child what their body needs to thrive. If that means through a tube then you should help them to get one placed.
We struggled back and forth on the decision. What it came down to was what Gage needed, not us. He was losing weight. Being 4 his little brain is developing a lot right now. He was missing an entire food group from his diet. How selfish of me to even think about trying to remove something else from his diet to get him a clear scope. It was time to throw in the towel to his horrid disease and give Gage what he needed, a g-tube.
Gage is shy. We knew it was probably going to be hard for him at first. He has shocked the pants off me though. He is quite proud of his tube. He’s also proud of how big his muscles are growing. I think it may have been a totally different ball game if he would have had to have an n-tube first. That may have turned him into a hermit. I’m glad we made the decision to push for the g-tube from the get go. I’m also so glad we had an understanding GI doctor at the time.
There are many diseases that may require kids to get a feeding tube. I only have experience with the allergy side of it. I think that all parents of tubies would agree, seeing your child thrive with a feeding tube is a huge sigh of relief.
I won’t lie, I don’t miss cooking for Gage one bit. However, if he had enough food in his diet to thrive on, I would cook for him again in a heartbeat. Hopefully that day will come. For now I’m just calling this my Gage cooking break.