Monthly Archives: December 2010

Anthony came home Friday afternoon after an 11 day hospitalization. We’ve been busy the past couple of days trying to catch up on life and get use to Anthony’s care. He came home with a g-tube and a PICC line. He is getting about 80% of his nourishment via TPN and about 20% via his g-tube. He is tolerating only around 20cc an hour via the g-tube.

The surgeon would like to try inserting a post-pyloric tube or GD-tube on January 5th. He will try placing the tube in the duodendum at a point before the anastomosis (where the two ends of his small intestine were sutured together). Anthony obviously can not tolerate gastric feedings, but hopefully if they can place the tube beyond the pyloric sphincter he will be able to tolerate tube feedings and we can ween him off the TPN. He will be in the hospital again for a couple of days after the new tube is placed to be sure he can tolerate the feedings via the new tube. We will also continue the TPN until he is able to take in enough calories via the tube. We are not in a hurry to get him off the TPN, because he has lost a lot of weight. We’d like to beef him up a bit while he has the PICC line.

Shortly after Anthony got home all the feeding supplies were delivered and a visiting nurse came to show us how to manage the PICC line, feedings and pump. She was very nice and helpful. She came back on Saturday to watch me hang the TPN. I felt like I was back in nursing school, but didn’t mind a bit, since it’s been a long time since I’ve done any kind of IV. I guess I passed, since I was on my own today. The nurse will come in once a week on Mondays to assess him and change his PICC line dressing.

We are running the TPN 16 hours a day from 6pm – 10am and the G-tube feedings during the day. Of course, keeping his bowels moving is another important part of his care.

That’s about it for now. We are so happy to have Anthony home for Christmas. We will deal with the next procedure after the holidays.

Anthony had a bit of a set back last night. They bumped his feeding up from 30 to 40cc per hour and he vomited. This is disappointing, but not surprising. The reason we switched Anthony from a G-tube to a GJ-tube is because he was not tolerating feedings in his stomach, due to severe reflux.

Problem is that we can’t replace the GJ-tube until he heals from the surgery and we can’t get enough nourishment into him via the G-tube, without risking aspiration. So, the plan is to insert a PICC line in order to feed him intravenously.

A PICC line is a type of catheter used for prolonged intravenous access. He will receive TPN (total parenteral nutrition) via the PICC line. We will continue to feed him as tolerated via the G-tube, because it is important to keep his GI system moving. But the PICC line will be used to supplement is feedings.

Once his GI tract is completely healed, we will decide whether or not to go back to the GJ-tube. There are other surgical options that we may explore in the future, but no one wants to do more surgery on Anthony at this time, especially us!

The PICC line was inserted at 2pm. They will be removing the central line, which is leaking. Plus, they don’t like to send patients home with a central line, they prefer PICC lines in the home setting. Apparently they are safer with less chance of infection.

His G-tube feedings have been restarted at 20cc per hour.

Anthony is making nice progress. It’s hard to believe he was on death’s door a week ago today.

Last night he started on small amounts of g-tube feedings at 10cc per hour. He tolerated that and is now getting 20cc per hour. He also had a bowel movement last night, so looks like things are moving along the GI tract.

We are not sure when he will be able to get another GJ-tube. This is a question for the surgeon. I assume he will want to be sure Anthony is well healed before placing another tube. In fact, we’d like to try going back to the g-tube, perhaps at a slower rate and different formula. We don’t want to risk aspiration, but we are also not keen on another GJ-tube. He is also still getting TPN via the central line.

Anthony had a renal ultra sound last night because of blood in his urine and a high BP while in the PICU. We expect that to be normal as his urine is now clear and his BP is fine.

Anthony has a congested cough, but he is moving air well and his O2 saturations are fine. We are not sure if the cough is just typical post-op stuff or aspiration. Hard to tell. Of course reflux and the danger of aspiration was the reason for the GJ-tube to begin with. We’ll see how it goes. But this will likely be addressed by weighing the pros and cons; benefits and risks…