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Tests, Tests and More Tests

We left off with Anthony being discharged Tuesday, February 8th with a goal of gradually increasing his J-tube feedings to 50cc/hour. This was not going well. He was barely tolerating 20cc an hour. On Wednesday night I had to shut off the feedings due to retching and gagging. Things were just not moving properly in his GI tract. Last night the feeding started leaking from around the tube and his abdomen was becoming firm and distended. My first thought was that the tube had been displaced and he might be developing peritonitis (a serious infection in the abdomen). We took him to the ER at 9pm Thursday night and the tests began. Not sure I can even remember all the tests, but this involved a night of blood work and x-rays that didn’t end until noontime today.

Anthony did have a fever and an elevated WBC (both signs of infection), but peritonitis was ruled out by a physical exam and a fluoroscopy study where they injected dye into his abdomen. While the dye did leak out from around the tube, it did not leak into the abdominal cavity. Good news. Looking at the CAT scan, it appeared as if the J-tube was kinked and may need to be replaced, which would mean another surgery. Before going back to the OR, the surgeon and radiologist decided to team up and see if they could correct the tube placement using a guide wire through the tube and visualization via fluoroscopy. Fluoroscopy is like real-time moving images using multiple x-rays. With some manipulation, they were able to get the tube properly placed. It’s hard to get a really good look with x-rays, but it seems that the balloon that holds the tube in place was defective. They managed to anchor the tube using a clamp system like the one in the post-op picture from my “Post-op Update, Day 2” entry. Eventually, once the J-tube tract is healed, they will replace this type of tube with something more permanent and secure. Hopefully, we won’t have this problem again.

So, the plan is to start over again with the J-tube feedings tomorrow, again with a goal of 50cc/hour. We shall see how that goes. I assume he will be discharged again with the PICC line and TPN until he reaches this goal.

I think that we have been spending way to much time in the hospital, as everyone knows us by name. Of course Anthony’s smile has become famous here on the Pediatric floor. Today, Anthony had two impressive student nurses caring for him. Both were first year students, but I could tell they will both become excellent nurses. Gives me some hope for the future of nursing. Tonight, Anthony has a male nurse. Male nurses are becoming more and more common too, which is also good for the profession IMHO.


Post-op Update, Day 3

We were hoping that Anthony would come home today, but this morning, he had a lot of drainage around his J-tube. The drainage looked like formula, so the doctors had to hold his feedings and do a radiology study to check the placement of the tube. It took half the day to get this test booked and done, so there was not enough time to get him up to the volume he needs to be at for discharge. Here is a photo that I grabbed with my camera phone during the radiology exam.

Anthony is lying on his side, the metal in the right of the photo is from his spinal fusion. The dark spot is the dye in his small intestine, which shows that the tube is working well and there is no leakage. By the time he got back to the floor and the feedings were restarted it was 4:00pm.

The surgical team made rounds at 5 pm and said that they want to keep Anthony in the hospital one more night in order to reach a goal of 50cc/hour via the J-tube. They also want to discontinue the TPN, although I would like to continue it a bit longer to be sure he gets enough calories, but the team wants to remove the central line ASAP. No problem, one less trip to the hospital to take out the PICC line.

So, hopefully he will have a good night and will come home tomorrow.

Here is a little something that made me LOL. Looking out the window of Anthony’s room there is a big message in the snow. Most people think the medical students wrote this message in the middle of the night, but no one saw a thing.


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.


Post-op Update, Day 1

Rich was “on duty” with Anthony this morning, while I was getting some stuff done around the house. I sent him a text message asking if he was at the hospital. Ask a silly question, and you get a silly answer:

Anthony is doing well today. He hasn’t had any pain meds since 7am and seems comfortable. He is definitely not quite himself as evidenced by no smiling yet. He has some congestion which isn’t surprising. Will need some chest PT. They started him on Pedialyte at 10cc an hour via the new J-tube. They will increase the rate and eventually switch him over to Peptamen as tolerated. He has been at 10cc per hour for 4 hours and so far so good. The G-tube is draining via gravity to keep his stomach empty.

We will likely be moving to the regular pediatric floor today.

I came in at 11am and Rich and I had lunch together in Anthony’s room. He has a really good nurse today. I’ve been very impressed with the nursing care here in the PICU.

We were chatting with the nurse about our boys and the care involved at home. She was just amazed that I was able to take care of the boys myself. Don’t I get nursing help? I told her that I manage just fine and that it really wasn’t that difficult. She was very impressed. Then she asked me if I was able to walk. At that point, I realized that I was sitting in Anthony’s wheelchair! There was only one chair in the room, so I just sat in Anthony’s chair. Never gave it a thought. We all had a good chuckle!

Will update again soon and post a photo of Anthony’s new tubes.


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.