Since many of you have been asking, I thought I would provide some info on feeding tubes for children.
I am by no means an expert (not yet anyway!), but this is what I know based on my own research, information and training we received at the hospital and from the home health-care company, and our experiences thus far with Bub's tube.
Q. What types of feeding tubes are there?
There are two main types: short term and long term. It depends on your individual situation and your doctor, but short term is usually defined as 6 months or less. Long term can be multiple months or even years.
Short Term Tubes:
- Nasogastric tube or NG tube. Manually inserted through the nose, down the esophagus, and into the stomach.
- Nasojejunal tube or NJ tube. Also manually inserted through the nose and down the esophagus, but is guided further down past the stomach and into one of the upper parts of the intestine called the jejunum.
Long Term Tubes:
- Gastrostomy tube or G tube. Surgically placed directly into the stomach through an incision in the abdominal wall. Placement is usually on the left had side slightly below the ribs.
- Jejunostomy or J tube. Also surgically placed through the abdominal wall and into the small intestine, bypassing the stomach. Placement is usually towards the center of the abdomen.
Q. How is liquid delivered into the feeding tube?
There are three ways of delivering liquid (usually formula) into a feeding tube: Bolus Method, Gravity Drip, and Pump Feeding.
The Bolus Method uses a syringe to deliver the formula into the outside opening of the feeding tube. The amount of formula is measured ahead of time, the syringe tip is placed inside the feeding tube opening, the formula is poured into the syringe, and then flows through the tube using gravity. This is the method we use for Bub during the day if he doesn’t finish his whole bottle by mouth. On average over the past week or so, he’s been taking about 10 ounces by mouth per day, and 5 ounces by Bolus.
The Gravity Drip, as you can probably guess, also uses gravity to deliver formula through the feeding tube. This method is similar to how IV doses of medication are given. An IV bag filled with formula is connected to the feeding tube and hung on an IV pole above the child’s head. A roller clamp may be placed on the bag to control the flow of formula, or it can be left alone and gravity forces the formula down and through the tube.
Pump Feeding requires a machine that controls how much formula is pumped out in a certain amount of time. The machine attaches to the IV pole, an IV bag filled with formula is hung near the top of the pole, and once the machine is turned on it runs until you manually turn it off. The downside is the machine has various alarms -- if there's an air bubble, if the cord from the IV bag comes loose from the feeding tube, if the formula runs out, it starts beeping. Unfortunately, we've encountered each one of these alarms, some of them more than once in a single night. Bub is on the pump all night long and gets 55 ml of formula every hour for 10 hours. That's an extra 18 ounces, just while he sleeps!
Q. Why does Bub need a feeding tube?
Bub eats and drinks a little bit, but we knew he wasn't getting enough because he was losing weight. Not only had we been taking him in for weight checks several times a week, but I knew just by how it felt to pick him up and hold him. The day he got his feeding tube, he weighed less than he did at his 9 month well baby checkup. He was also acting lethargic and irritable, which isn't his normal disposition. He's usually a happy, active, playful kid, and he just wasn't acting like himself.
By giving him a feeding tube, he can continue to eat and drink at his own pace, and we can give him the extra calories he needs to grow and thrive through his tube.
At first they thought he had a milk allergy, and that's why he wasn't eating or drinking. And by "they" I mean the doctors. I absolutely did not think he had a milk allergy. And I'm his Mom, the one who holds and cuddles him when he doesn't feel well, spends hours every day trying to feed him, and knows his body language. So when two sets of blood work and the biopsy results from the endoscopy all came back normal, it was hard for me not to call them up and say, "I told ya so!" No allergies is great news, except we still don't know why Bub doesn't like to eat or drink.
It could be he just needs time to mature (to "grow out of it" as they say), and to realize that eating food is "fun".
Another possibility is that he associates eating with pain in his stomach.
At an early age (right about 3 months), Bub started not wanting to drink his bottles and was having severe stomach pains to the point where he was inconsolable for hours at a time and wasn’t sleeping. He was diagnosed with acid reflux and put on a prescription non-dairy formula and acid-reducing medicine. After a couple months he slowly started drinking his bottles again, but it was always a struggle.
Around 10 months we started introducing pureed foods and it was slow going at first. After a while though, he got the hang of it and was eating multiple jars at a sitting. About a week before his first birthday he went on a total bottle strike, no formula for 12 days. Right around that time he also stopped eating pureed foods. We finally got him to start drinking again but he wasn’t taking in nearly enough, maybe 8 ounces a day and sometimes even less. By comparison, he used to drink 20 ounces a day, and Fin (who has always loved her bottles) was drinking 28-30 ounces. We decided to give pureed foods a break and tried him on “real people food”, but he would only pick at a few things and hardly ever put anything in his mouth.
Since getting the tube, Bub is drinking about the same as he was before (10 ounces or so per day), and eating a few bites of food here and there. But add in all the extra calories he gets through the tube, no wonder he's gained over a pound already!
Q. How long will Bub be on the NG tube?
It really depends, but I’m thinking at least a couple months. I’ve been told it can take at least that long for young kids to get used to eating and drinking on their own again.
Q. What happens if he doesn't learn to eat on his own?
I'm trying not to think about that too much, but one option would be the G tube. It's a longer term solution but would require surgery and another hospital stay. For now though, Bub is exceeding all of our expectations. His tummy is tolerating the extra calories, he doesn't seem too bothered by the tube, he's gaining weight, and best of all, his laugh is more contagious than ever.
Q. Does it hurt?
He can't tell us of course, but I don't think so. The one thing none of us look forward to is changing the tube. We actually just had to do it yesterday because the tape we use to secure the tube to his cheek was irritating his skin. Unfortunately, the only thing to do when that happens is to switch the tube to the other side of his nose, which means pulling it out and putting a new one back in. I can only imagine how uncomfortable and scared he must be for those 45 seconds. My only saving grace is that once it's in, he can't wait to get back to playing, climbing, and pulling on his sister's hair.
One thing this experience has taught me is that kids are so much more resilient than adults. Yesterday after switching his tube, it took me at least five minutes to catch my breath and regain my composure. Unlike Bub, who as soon as we were done stood himself up, looked for his sister, and started playing tug-o-war (their new favorite game!).
Q. Will having a tube hinder his development in any way?
So far it hasn't. And we don't think it will in the future either. He's still just as active, playful, and curious as he was pre-tube. If anything, he's got even more energy and spunk than he did before. Blame it on the full tummy!
Q. And finally, what does an NG tube look like?
And the answer is ....
No comments:
Post a Comment