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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.


Update on Anthony

Apologies for the delay in updating. I’ve been trying to catch up on life after hospitalization. Anthony was discharged from the hospital Tuesday evening, that is the good news. However, he is having trouble tolerating feedings via the j-tube. The doctors were trying to increase his feedings to the goal of 50cc/hour in order to discontinue his TPN and remove the PICC line. But every time they would increase his feedings beyond 20cc/hour Anthony would gag and vomit, even with his g-tube to drainage. So, we decided to continue the TPN at home and gradually – hopefully – increase his feedings. So, that’s were we are at now. The hope is that Anthony’s GI tract will start moving better with time.

We received a pile of letters and statements in the mail from our insurance company concerning Anthony’s recent hospitalizations. Here is a peek at one of the more amusing statements. Ya, I’ll get that check in the mail, LOL! Of course we will not be paying this amount, but I’ll likely spend a lot of time getting this stuff straightened out. Have I mentioned lately that our health care system sucks?


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.