February 7-13, 2016 is Feeding Tube Awareness Week. There are many reasons a person may be on a feeding tube and for anyone involved with them, there is a lot that has to be learned. Some of it you can find advice on and other things you discover all on your own.
A feeding tube is what gave me my son back. His little body was in a constant fight against all foods and by the time he was 7 years old his health was going downhill fast. Shortly after turning 8, he had surgery for his g-tube to be placed and has been fed primarily via a feeding tube ever since. Through his feeding tube he can better tolerate the special formula he needs in order to get his nutrition. Being allergic to all but about 10 foods makes this tube a necessity for us. And honestly the tube is a life saver.
But there are some things that no one tells you about having a child with a feeding tube. Things you have to learn on your own. So during this week of feeding tube awareness, I reach out to you in an effort to bring awareness to the things that are often left unspoken.
When your child gets placed on a feeding tube, the team of doctors who place the tube and deal with the reasons for needing the tube are all experts in their field. They know what is needed for the care, nutrition, and well being of your child.
But then there are your child’s other doctors. The regular doctors. The ones who are experts in their own fields, but due to the rarity of dealing with medically fragile children, they do not have expertise on the needs your child may have.
Fortunately we have a great pediatrician who does all she can to meet my son’s regular needs. But there is another doctor that is seen regularly: the dentist.
This is where I really started to learn about the things they don’t talk about. My son ended up changing to a new dentist in the midst of all we had going on (that’s a long story for another time). This new dentist made us jump through multiple hoops before they would even look in my son’s mouth all because he had a port for a feeding tube placed in his stomach. To this day I seriously wonder if they would even know about it had I not been totally honest with them up front about medical conditions.
The next problem comes during cleanings. Since most pediatric dentists have multiple cleaning chairs in one location it is easy to overhear every conversation. As I sit and listen, I mentally prepare myself for what will come when it is my turn to hear about my son’s teeth. The “he really should drink water and not tea or juice” speech. My son is allowed to drink sweet tea, pure blueberry juice, and pure cherry juice. That’s it other than water. When it’s my turn, I politely listen and usually just go about my life, but during this past cleaning. I couldn’t keep quiet. When the hygienist started her lecture, I simply looked at her and said I couldn’t take away tea once a day or juice once every few days because for him those items are a couple of the only things he ever gets to taste by mouth. She was stunned into silence.
These are the things that no one tells you about. The regular things that you don’t even think to ask about until you’ve lived through an experience such as this.
So this year, I want to bring awareness to the other healthcare providers who care for children with feeding tubes. While there are many things children with feeding tubes can do that are just like any of the rest of us, there are some things that are going to be different and healthcare providers need to start learning a little bit about these complexities.
To the parent out there who is faced with their child going on a feeding tube, be aware that there are obstacles such as these that are out there. It is our job to help bring awareness so that our children will get the treatment they need and deserve just like any other child.