Albumen lower, valve more leaky

As part of the daily blood labs, Riley's electrolytes are being tested (since he's getting so many diuretics and peeing too much can tilt them off balance), and so is his albumen (the protein in the blood). Albumen has dropped since his blood test last week. Last week it was 3.0, and today it was 2.2 (normal range is 3.3 to 5.0). This is making the doctors wonder again about the PLE. A stool sample could have confirmed PLE. We should have had the results of the stool sample taken to the lab last week, but it turns out that they ran the wrong test. So we need another sample. However, since he isn't eating anything, who knows when we'll get an opportunity to get another sample. And since he isn't eating, his blood protein levels may have dropped anyway. So it is possible that a stool sample will be useless at this point.

The other thing that was discussed with Dr. Moore (another UCSF cardiologist) was that it seems that his "mild-to-moderately leaky" valve is moving towards being a more "moderately leaky" valve all the time. This could be part of the fluid problem. The valve could be replaced during surgery. This is all second-hand from Ken who was there to talk with Dr. Moore. Ken will have to update this information if I'm off or if there is more to add. [Update from Ken: Dr. Moore didn't give me the impression that Riley's valve leakiness has changed, just that in the situation where effusions are suspicious, a leaky valve is one of the candidates. They'd prefer that Riley's valve wasn't leaky at all but nobody has indicated that it's gotten any worse.]

As for the fluid, there isn't much news to report. We are basically going to be in a holding pattern while we wait for the diuretics to start draining out all that fluid. Riley was very sad and angry whenever anyone wanted to go near his IV to flush it. A couple of weeks ago, we started talking about how it is OK to say "no" if you don't like something that someone says to you. Or if someone does something to you that you don't like.* So he would shout several times, "I don't like that. I want you to stop doing that. I need a break." Sadly, we can't necessarily respect his boundaries in the hospital.

We have not talked with Dr. Tarnoff since yesterday, but UCSF has been in contact with him to keep him up to date. Tarnoff will be at the hospital on Thursday. Perhaps we'll be able to talk with him by phone before then to get his input.

I'm not sure how the x-ray today compared to yesterday's x-ray. If there was much change in the fluid, no one said anything about it. They did do some kind of swab in his nose to check for different kids of the flu and some other infections, which all came back negative. They also lower his fluid intake to 880 milliliters, down from 1000 milliliters.

He mostly slept and watched TV today (we watched Free Willy twice). He is so tired because he isn't eating anything, because he's just not getting enough rest in the hospital, and because his body/heart is working so hard with so much extra fluid in his lungs.

(*sidebar: Trying to empower our shy guy to communicate how he feels came up after a very strange incident in San Francisco when some Japanese tourists were so enamored with his blonde hair that they actually picked him up while he was eating his lunch to go be photographed with him. Without permission--from me or Riley. He was very shy about the whole thing and I asked those people to leave him alone immediately!! Anyway, this is totally unrelated to the hospital, but he has been applying this concept properly.)