today

Today Fiona had an appointment with our local doctor. He said that 3 hours is too long for her infusion. He told us that Fiona shouldn't be going anywhere, especially the children's hospital, unless she is taking Tamiflu. He would like to see her go back to an electronic pump. She still looks good. I think that isolation has kept her healthy.

Accredo called to set up the order for her infusions for next month. It was a long call because they are trying to figure out how to reduce the length of her infusions. The plan is to have a nurse come watch me give her an infusion. They are sending a new pump just in case this one is malfunctioning. If I'm giving the infusion correctly, and the new pump doesn't reduce the time they will try different rate tubing. Rate tubing controls how fast the liquid comes out of the pump. The tubing we are using should make the infusion about an hour and a half.

I'm going to work on having our doctor's office write an order for an electronic pump to Accredo. Hopefully we can go back to the same pump we used to use.

Fiona's fundraiser