Yesterday's treatment was the best so far for Fiona. I think we've found the right combination of medicines to give her before her treatment. She wasn't scared, and she didn't shake. It was really good for her. She was a mess yesterday afternoon, and she still is this morning, but I'll deal with it if it means a better treatment for her.
The new pump and system are very complicated and time consuming. The ridiculous thing about this pump is that the tubing that comes with it holds 5 mls of hizentra. That's one fifth of her treatment. I worked really hard to make sure that there was extra air in the infusion bag to push the fluid through the tube up to her needle set. We're going to let our insurance company know that this will not work for us. Hopefully they will let us go back to Biorx, and their tiny, wonderful pump!
Everything else is the same. Fiona is healthy and isolated. Her treatments are working. We are careful not to expose her to anything. I wash my hands a million times a day. We keep hoping that the genetic test will come back soon, and that it will give us some answers.