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Post-op Update, Day 2

Anthony had a good night and is now up to 30cc/hour of Peptamen via his new J-tube. I would guess that he will come home tomorrow if everything continues to go as planned. Tomorrow will be a busy day changing the dressing, maybe the tubes. Not sure if the current tubes are the same type he will come home with. Will also need to continue his TPN for a while as we work on increasing his calories via the j-tube. Will need new orders and supplies. So with all the paperwork etc, we will likely get home mid-to-late afternoon tomorrow.

Here is a photo of Anthony’s abdomen (apologies to those who might be a bit squeamish). They were able to use the same incision yet again, but this time not quite as long a cut.

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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.

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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). More info here

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.

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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
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.

diagram
Diagram shows placement of GJ-tube, through the stomach and into the small intestine.
tube
This is what the tube looks like. 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.
xray
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.

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Public Option Please

My letter to Massachusetts Senator John Kerry:

Dear Senator Kerry,

I am an RN and mother of three sons who all have disabilities. I am also an advocate for children with complex health care needs and I network with parents of children from all over the US. Most of these children have tracheostomies, g-tubes and many are ventilator dependent and require 24/7 care.

I am so thankful to live in Massachusetts where we have easy access to quality health care and medicaid waivers for children with disabilities and complex medical needs. But many people in other states do not get the help they need in order to care for their children at home. In some states, children are put on a waiting list for many years in order to get the help they need right now. It is not fair that a child is denied assistance, just because they happen to live on the other side of a state line.

This is just one of many reasons why I support a public option and why I feel that this part of the bill must be included in order to have ‘real’ health care reform.

Thank you for all you do.

Sincerely,
Cynthia Bissell
Grafton, Massachusetts

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