Anthony had a rough time this past winter. He seemed to pick up every cold that went around and also had increased problems with gastric reflux (stomach content backing up into his esophagus). At times the reflux was so bad that you could see the Pediasure bubbling up in the back of his throat. Add to this Anthony’s neurological impairment, muscle weakness, cognitive and positioning problems and you have a recipe for disaster. Reflux in children like Anthony often leads to aspiration pneumonia and even death.
After trying a few medications with minimal improvement, we were left with a couple of options. First is a procedure called a nissen fundoplication, a surgery in which part of the stomach is wrapped around the lower end of the esophagus and stitched in place. This tightens the sphincter between the stomach and esophagus to prevent stomach content from backing up. Anthony had this procedure when he was young (before he joined our family). Because he had already had the surgery once, he probably has a lot of scar tissue in that area, which would make the surgery more difficult.
Another less invasive option is to try a GJ-tube (Gastrojejunal tube). Anthony already has a g-tube or gastrostomy tube (feeding tube into the stomach). So we decided to convert his G-tube to a GJ-tube. Anthony had the G-tube to GJ-tube conversion Wednesday (June 30, 2010). Using x-ray images for guidance, a radiologist threaded a long feeding catheter into the current g-tube site, through the stomach and into his small bowel. By feeding Anthony directly into the small intestine, this should greatly reduce the chances of reflux and aspiration. It took almost 2 hours to get the correct placement of the tube, but he tolerated the procedure well and so far he is tolerating his feedings. It’s a triple lumen tube, one port goes to the stomach, one goes to the intestine and the 3rd is to fill the balloon which helps to keep the tube secure.
The disadvantage to feeding directly into the small intestine is that feedings have to be delivered slowly. Unlike the stomach – which is a pouch to hold food – the small intestine doesn’t have any storage space, so feedings have to run very slowly. Basically, Anthony will be fed 24/7 in order to deliver enough calories. Also, if this tube gets displaced, plugged or pulled out or when it needs to be replaced (every couple of months or so) this will involve going to the hospital. With the g-tube, I was able to change the tube myself at home. However, these disadvantages are minor if this new tube prevents aspiration.
Hopefully Anthony will have a healthy summer and we can get enough calories into him so that he will gain some weight. He is out of school for the summer, but we are hoping to have him strong enough to return to school in September.
Anthony, get strong and be well.
Thanks George. We are working on it:-)
I hope he gets the relief from reflux that you are looking for. What a champ to hang in there without being under, Skyler would never do that!
Chris, Eric would never tolerate this either!