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Plan B

It seems that Anthony is unable to tolerate anything in his stomach without reflux causing stomach contents up to the back of his throat. Anthony has a very strong cough, which is good for clearing his lungs, however when he coughs, this also pushes his stomach contents up to his airway, which causes more coughing – it’s a vicious cycle. Even on an empty stomach, the stomach still has acids and any saliva that Anthony swallows, so his stomach is never really empty. We tried attaching a bag to the G-tube port (stomach port) to allow his stomach to empty. With this drainage bag, when he coughs, the acids go into the bag rather than up to his airway. We were feeding him via the J-tube and not seeing any formula in his stomach drainage. This approach was working great and we were up to 40cc/hour (with a goal of 50cc/hour).

Unfortunately, Anthony vomited about a week ago and the vomiting seems to have displaced the tube. We are now getting formula in his G-tube drainage. Basically, some of the formula is going in and then out again. This will not do. It seems the shorter GD-tube will not stay in place, plus considering the difficulty placing this type of tube, we have decided to go with a surgical J-tube.

So, Anthony will have two separate tubes, a G-tube to keep his stomach empty and a J-tube for feeding. The J-tube will be place beyond the site of his vulvulas surgery. Another advantage to this type of tube is that once Anthony is completely healed from this surgery, I’ll be able to change or replace both tubes myself, without having to go to the hospital. This is a big plus to me.

Anthony is scheduled to be admitted to the hospital on January 31st for pre-op testing and bowel prep. Surgery will be on Tuesday Feb. 1st and if all goes well he will be discharged on Wednesday or Thursday. He will continue on TPN via the PICC line until we are able to get enough calories into him via the new J-tube. We are optimistic that this procedure will work for Anthony and we can get him off the TPN and back to school.


Update on Anthony

Brief recap

On December 7th Anthony had emergency surgery for a jejunal volvulus and had 135cm of his small intestine removed. Details here

He spent 11 days in the hospital and came home with a g-tube and a PICC line. Because of the surgery, they had to discontinue his GJ-tube and place a G-tube. Prior to the volvulus, Anthony had to be fed via J-tube (Jejunal tube) because he is unable to tolerate G-tube (gastostomy tube) feedings due to severe gastric reflux.

We were unable to feed him sufficient calories via the new g-tube because of his reflux and we could not place a new GJ-tube because of the surgery. So, he came home with a PICC line for TPN (Total Parenteral Nutrition via an intravenous).

The Plan: to replace his GJ-tube once his small intestine heals. If they are unable to replace the GJ-tube, then they would do a surgical J-tube.


On January 5, 2011, Anthony returned to the hospital for a GJ-tube. Anthony had had a G-tube for many years. However, after his spinal fusion about 4 years ago, his reflux kept getting worse until we finally decided to place a GJ-tube. A GJ-tube is basically a tube that is threaded through his present G-tube stoma and then guided via x-ray into his Jejunum (second part of the small intestine).

Because of Anthony’s past abdominal surgeries (Nissen fundoplication and the more recent bowel resection) threading the tube from stomach into the small intestine is a challenge. Plus, they have to be very careful with the placement of the tube to avoid the surgical site (where they sutured the small intestine together). They had to order a custom JG-tube, which is a short tube and could actually be called a GD-tube, because it goes into the duodenum, (first portion of the small intestine). If they were unable to place this tube, the back-up plan was to do a surgical J-tube.

It took them about 3 hours under general anesthesia to get proper placement of the tube. He was admitted overnight for observation. He was discharge the next day with the new tube at 20cc/per hour. We need to gradually increase this amount with a goal of 50cc/hr 24/7. This is enough calories to be able to discontinue the TPN and remove the PICC line.

We are really in no hurry to stop the TPN, because Anthony has lost a lot of weight and we would like him to gain some weight before removing the PICC line. We have a follow up appointment with the surgeon on Wednesday.


Update on Anthony

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.

Nissen Fundoplication

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.

GJ-Tube placement


Xray used to help guide the tube into the small intestine. (The rods and wires are from Anthony’s spinal fusion)


Anthony being cooperative as usual. No sedation needed.


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.