Friday Update

Whew! It's been another crazy day! I have yet to be bored during this hospital stay! I wish I could say that the vomiting and diarrhea have improved, but they have not. We are discontinuing all non-essential medications through her g-tube in hopes that a smaller volume of meds will help the more critical meds (like her seizure med) stay down longer and hopefully get absorbed.

In order to help with that, we are trying a dose of zofran before her daily g-tube meds. We were hesitant to try it because zofran often causes Annie to have seizures, but it was worth a shot. Sure enough, Annie's seizures have increased, in intensity, frequency, and length. One grand mal seizure today was particularly scary and one of the worst we've ever seen. She didn't vomit for about 3-4 hours after the zofran, which was a nice break, but then she made up for it with lots of vomiting once the zofran wore off. Today she continues to vomit about every 20-30 minutes, even though we aren't putting anything in her stomach.

Since Annie has had no nutrition in about 10 days or so, they will be placing a central line tomorrow afternoon. That's a procedure that will be done in the OR under general anesthesia. The central line will allow her to receive TPN and start getting some nutrition. While she is under, they will also be placing a GJ tube. Annie currently has a G-tube which we use (when she's well) to feed her all her food and meds. It's a port directly into her stomach. Tomorrow they will be replacing her g-tube port with a GJ port. This will allow the same access into her stomach, but it will also allow access directly into her jejunum (small intestines). This will allow us to by-pass her stomach completely and get her seizure med down deeper into her GI tract with the hopes that it will have a better chance of being absorbed before Annie vomits. We anticipate that the GJ tube will just be temporary and once Annie recovers, she can go back to the G-tube which is simpler and easier for us to manage and change ourselves at home.

We are keeping Annie NPO for now, although the GI doctor is concerned about gastroparesis and wants her to start pedialyte slowly again. But with her still vomiting so much, we just don't think that's a good idea. And she'll have to be NPO for her procedures tomorrow, so we will wait another day to decide that. Annie also might be having a small bowel follow through study which she'd need to be NPO for.

But first, they will do an abdominal x-ray tomorrow to look for any bowel obstructions. I suspect she has some kind of small bowel obstruction because of the volume she is vomiting up, despite not receiving anything in her stomach. If the x-ray is inconclusive, they will consider doing a small bowel follow through using barium as well as a gastric emptying study.  And if all that looks good, it's probably time to start exploring neurological issues. There is a small possibility that all her issues will resolve with a few more doses of her antibiotic for her pyelonephritis, but again, the amount of stomach and intestinal juices coming up indicates there is probably some kind of obstruction. 

We are still waiting for the blood culture results which will be back tomorrow afternoon. Once those are back and negative, they will be able to place the central line. Her other labs looks pretty good, so we don't anticipate a positive blood culture. But if it is positive, there will be a big concern about the rods in her back and they will consider doing a CT scan to check for infection in her spine.We don't anticipate that being the case, but if so, they would mostly likely remove all the hardware in her back. 

So hopefully tomorrow we'll find the issue with the abdominal x-ray and be on the way to treatment and recovery!