Last week I took Nathan to the allergist for a full panel scratch test. We wanted to rule out allergies as a source of Nathan’s esophageal reflux. I had been looking forward to this appointment for a long time and wouldn’t you know it I was late. Not just five minutes late. It turns out almost 30 minutes late! Partly because I was on a Nathan-related phone call that I couldn’t break away from and partly because the parking garage was full and they still let my car in, along with about six others just waiting at the gate to get back out again to scramble for a spot somewhere else. I ended up parking in the ER lot and feeling very badly that I had probably taken a spot from some other family in need of easy access to the hospital. Then I sprinted across the hospital campus pushing my son in a stroller and lugging all of his medical equipment with me. What a sight. Responsible is basically my middle name, but that day I would have answered to Frazzled.
I did call the receptionist and she told me to still come. So when I finally arrived in the waiting room and sat down next to a seven year-old girl and her parents, I had to feed Nathan. I don’t start sweating and getting dizzy about public feedings like I used to, but I also feel incredibly abnormal and askew when I need to tube feed Nathan somewhere other than at home. I knew based on our proximity and her curiosity I wouldn’t get away with not saying anything about Nathan’s tube to the little girl. She had already taken an interest in him from the moment we strolled into the waiting room. So when I heard her whisper to her mom, “What’s she doing?” I decided it was time to rescue the poor mother, who didn’t know any better than her daughter what was happening, and invite them into Nathan’s meal.
This is how he eats. Do you want me to show you?
Nods her head.
Some people can eat using their mouths, like you. Some people have a feeding tube that puts food into their tummy.
Then I went on to show her how to connect the extension tube on his tummy to the feeding bag. I let her see the feeding pump and explained that it’s like a computer and is programmed to give him exactly how much food he needs for his lunchtime meal. Simple to me. Probably mind-boggling to the outsider.
I was quite impressed by how interested she was. At her age I would have stayed velcro-close to my mom and not said a thing. Now as a grown-up, I’m challenged to say things I would have never said before Nathan. This boy is a life-changer in so many ways.
Since this week is Feeding Tube Awareness Week allow me to share with you a little more about Nathan’s tube. Chances are if you follow this blog, you are aware that he has a feeding tube, but maybe you don’t know how a feeding tube works. Or why he has one in the first place. It’s become normal for our family. I forget there are so many others out there who have never known anyone on a feeding tube.
How Nathan’s Feeding Tube Works
Nathan has what’s called a G-button that was surgically placed in his stomach at four weeks old. It’s called a G-button, or G-tube, which stands for gastrostomy and because it looks like a button on his tummy. A short tube called a Mic-key extension tube connects to the button. This extension tube allows us to give him medicines and free water using syringes. Sometimes kids can take bolus feedings of formula through the extension tube as well. Nathan was doing that last summer, but then with all of his pain, we reverted back to using a feeding pump. The feeding pump allows you to insert a food pouch with a much longer tube, which then connects to the extension tube. The benefit of the feeding pump is that you are able to program the pump exactly the amount of formula you want to feed him and at what rate, or how fast , you want it to go in his tummy.
Why Does Nathan Have a Feeding Tube?
Nathan has a feeding tube because he is not able to swallow without aspirating. Aspirating means that the food/liquid goes down his airway into his lungs, instead of his esophagus into his stomach. We know this because swallow studies reveal this is what’s happening on an x-ray and also we can hear him gulping with tastes. On days where he is more sensitive to the sensation of food in his mouth and more cognitively coordinated, he is able to swallow stage 2 baby puree. Think banana consistency. That type of food, gives him the best bet at eating by mouth. Feeding difficulties are common in kids with Cri du chat syndrome, though not all of them have feeding tubes.
What Does Nathan Eat through His Feeding Tube?
The formula that Nathan is eating is called Compleat. Our dietician chose it for him because I wanted to give him something that has real food. It does have chicken, green beans, cranberries, and then all whole lot of extra vitamins. She reminded me at our last appointment that he is probably getting better nutrition that most 2 year-olds because, true to its name, it has complete nutrition. The problem with it is that it is processed. There are some alternatives, like Real Food Blends and homemade formula, that we’ve trialed. The problem is they don’t go through a feeding pump because it’s real blended food. Right now, Nathan needs the pump so we can slowly give him his food. You wouldn’t believe all the different things I have put into a blender trying to give him a chance at tasting different foods: lasagna, sloppy joes, sweet potatoes, etc. It’s not quite as easy as it sounds, but I have learned lots of tricks from the Homemade Blended Formula Handbook.
Will Nathan Ever be Able to Eat by Mouth?
Truly, only God knows the answer to that question. Even the experts can’t tell us. We are continuing to work on eating by mouth doing therapy three times per week. As of last week, Nathan is back at vital stim therapy which shocks the muscles in his throat to elicit a swallow. He is certainly gulping less with the device on, but as his therapist reminded me, it is not designed for long-term use. In other words, Nathan would never be able to use it for every meal just so that he can swallow without aspirating. We know it helps him when he’s in a treatment cycle, but its long-term effectiveness is yet to be determined. I’m thankful that, about 50% of the time, he can taste things with us at family meals. And if not, he can still sit with us and enjoy our company while he gets his tube feed.
Sharing Nathan’s meal with the seven year-old at the doctor’s office last week also opened up the conversation between her parents and me. They began to ask questions, which I answered as best I could. Questions just like the ones listed above. I began to appreciate the reason why I was running so late that afternoon. It’s nice to have strangers interested in your story enough to ask you to tell it, enough to ask the same concerned parent questions I’m asking. All the questions this fellow mom asked reminded me that those are my questions too. Of course they are. What mom doesn’t want to know how to nurture their child through food and the community of sharing a meal together?
So running late actually forced me to slow down and tell someone else about feeding tubes. It helped me to think through why and how we are doing this for Nathan. I do hope that one day he can eat by mouth. That he can taste things like cheeseburgers and roasted broccoli and turkey and chocolate cake. It’s not normal now, but we make do as best we can.
By the way, his scratch test came back negative. He has no known food allergies. Next we pursue more tummy studies. He has another upper endoscopy and MRI scheduled for the end of the month. I’ll also update you on the bladder/kidneys/cathing thing soon too.
For more information on Tube Feedings, please check out this Family and Friend Guide to Tube Feedings.
If you are trying to decide whether or not a feeding tube is best for your child, I encourage you to read my article, Deciding on a G-Tube for Your Preemie. It was a hard decision, but ultimately a good decision.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!