Saturday

For the last few days the oxygen saturation in my blood has been dropping and my weight has been increasing, which means I'm retaining water again. Today my legs where swelled back up to the size they were when this all started. This is caused by something called Protein-Losing Enteropathy according to my cardiologists and occurs sometimes in people who have had a Fontan surgery. The cause is unkown, and it basically means that my body is losing protein.

Normally, when your body maintains the proper level of protein, the protein soaks up fluids and keeps it in your bloodstream so your body can process it properly. When your protein gets low, the fluid it would soak up can leak outside of your bloodstream and collect in you legs and abdomen, causing swelling. And when you sit in a hospital bed all day, it can collect in your chest cavity causing breathing problems like the low O2 saturation. The way we are getting rid of the excess fluid is by adding Albumin to my blood stream to draw the fluid back into the bloodstream, and then giving me lasix, which is a diuretic that causes me to "process" the fluids more quickly than normal. Although I got rid of a lot of fluid today, my legs are still pretty swollen and so we'll probably have to do two more "doses" tomorrow, one in the morning and one in the afternoon. Hopefully that will get me back down to my dry weight.

I also had another radiation treatment for my head lumps. It was quick, painless and really uneventful. We'll start doing both radiation treatments on Monday.