No fluid in abdomen

Riley had an ultrasound of his abdomen today and the test found his abdomen to be clear of fluid. This is a good sign. As a result, Dr. Tarnoff said it is unlikely that it is Protein-Losing Enteropathy (PLE). That said, we are still going forward with the stool sample to test for protein in his stool. If the stool sample test also comes back negative, we can eliminate PLE from our list of concerns. During the exam today, Riley said that he it hurt quite a bit while the technician was pressing around his liver. We're still not clear on whether or not his liver is enlarged. The other thing that was discovered was that there is fluid under both of his lungs again.

Whenever we end up in Redwood City for Riley's appointments or in the Emergency Room, there is always great concern over his condition because his anatomy is so unusual. This usually leads to unnecessary treatment or just sitting around longer while people rush around trying to figure out how to treat him. The latter happened today. Following the test, I was a little extra concerned because we were told that we could not leave until the doctor came to talk with us--a doctor we have never met before. We ended up waiting nearly an hour while the results were reviewed, discussed, reviewed again. When this doctor came to talk with us, he asked about Riley's breathing and directed us to take him to the ER if he started to have difficulty breathing. This is, of course, because Riley has a "significant" pocket of fluid under his left lung. There was also a smaller pocket under his right lung. If this is true, then that has changed since our visit with Tarnoff last month when we were told that the right side had dried up. We're also not sure what he meant by "significant" since the actual pocket was not measured during the exam. Since these technicians and doctors are unfamiliar with Riley, it's hard to know if things have actually changed. I hope to talk with Dr. Tarnoff tomorrow to find out how the effusions are different from the last check, if at all.

I also picked up the stool sample kit from the lab. Once the specimen is handed to the lab, results will take three or four days.

If PLE is eliminated from our list of concerns, it does not explain why Riley's albumen is low (his measured 3.0 instead of the regular 3.3 to 5.0). Tarnoff said that it could be dietary (ie: he's not getting enough protein in his diet), and he may refer us to a nutritionist. Also, we still don't know why the fluid is accumulating under his lungs. Perhaps the best we can hope for at this point is an obstruction that can be fixed with stents in the cath lab.

Finally, I had a very negative experience today with the nurse filling in for Dr. Tarnoff's regular nurse. I was told that this new nurse would call me last Friday to set up the ultrasound and the lab work in Redwood City. To be proactive, I called and left a message expressing my interest in getting things going as soon as possible. I did not hear back from her on Friday. So I called her again this morning. When she finally called me back, she was extremely rude and made it clear that she had no intention of setting up my appointment and that I needed to call radiology in Redwood City for myself. If she had just called to tell me that in a nice way, I would have said okay. But her attitude, tone and annoyance that I had the audacity to call and leave two message in an effort to find out what is going on was inexcusable. I was fuming. Yes I'm anxious to get the tests set up so that we can try and figure out what is wrong with Riley. And yes I'm going to be frustrated when people don't do what they are supposed to do. I can't wait for the regular nurse to come back!