Saturday Update

There has been so much going on the last 24 hours. Last night around midnight Annie started vomiting copious amounts of dark brown fluids. Since she still isn't eating or drinking anything, the volume was rather surprising and the color was slightly alarming. We got them to move her 6:00am abdominal x-ray to before 1:00am. The techs can't say anything about the films, but the nurse and I both saw it. We could clearly see a large mass of barium still in her gut from her upper GI study on Thursday. They didn't allow me to spend much time looking at it, so my initial thought was that she in fact did have an obstruction with all that barium still sitting in there. But we had to wait until morning to get the official report.

The rest of the night Annie continued to vomit lots of dark brown fluid. We connected her g-tube to suction hoping to keep her stomach empty that way, and that has helped a fair amount, but she still continued to vomit through the night and continues to retch and dry heave all day. She continues to be hooked to g-tube suction today. After several more seizures last night, and two failed blood draws, morning came before we knew it and before we got any sleep.

The interventional radiologist and the hospitalist met with me at the nurses' station to look at all of Annie's imaging together and figure out what's going on. Surprisingly, the barium we saw on her abdominal x-ray was all in her ascending colon, indicating that there are no obstructions. But she does have an ileus, meaning there's poor motility through her small and/or large bowel.

We reviewed all her upper GI images and again, he confirmed that they looked good too. I'm stunned. The interventional radiologist also looked through the renal sonogram images with me and confirmed what the urologist said about the pyelonephritis being only borderline present. Which has some of us on the team wondering why she'd be so sick if it's just a minor case of pyelonephritis. Several of us still believe it is secondary to a different issue.

We agreed that with no obstructions, the GJ tube is still something worth trying. Once Annie recovers, we can always try going back to the G-tube eventually, which I'll want to do. So we are just waiting for her to come out of surgery for the GJ tube placement as well as a PICC line so Annie can receive a more complete TPN IV solution to give her some nutrition.

After that, the plan is to continue the bactrim and watch her white blood count. It came down today from 28,000 to 21,000. So maybe we're moving in the right direction. Her symptoms just don't show it.



Below is the kind of G-button Annie has had since she was 2 years old. The top port allows access straight into her stomach. The side port fills the balloon which holds the button in place. (The balloon is inside her stomach.) We replace this button every 3 months and we just do it ourselves at home. If this button clogs (which happens somewhat frequently with one of her medications), we can just take it out of her, clear the clog and insert it back into her stomach.

Below is a GJ tube which they are inserting today in place of the G-button. The top has three ports instead of two. It has the same port that allows direct access to the stomach, and the same balloon port to fill the balloon that holds it in place, but the GJ tube also has a third port that allows access directly to the jejunum (small intestine). So you can see the balloon that gets inflated in Annie's stomach like the G-button, and then below the balloon is a tube that gets snaked down into the jejunum. That is why this tube has to be placed under general anesthesia with ultrasound guidance. So when this tube needs to be replaced, or if it clogs, we can't just take it out at home and put it back in.

The purpose of this GJ tube is to allow us to deliver her medications directly to her jejunum, bypassing her stomach, in the hopes that her medications will absorb more quickly before getting vomited up (particularly her seizure medication). This will also help us possibly resume feedings sooner if she can tolerate her formula straight to her jejunum before she can tolerate food in her stomach.