what is a treatment like?

As I give her today's treatment I'll try to describe it for you. An hour before her treatment we put on some numbing cream and cover it with a clear plastic bandage, like what they cover an IV with. Then I try to distract her for an hour while the cream works. Right now she is poking the cream and saying, "gushy, squishy, gushy."

While I'm trying to distract her I get the supplies ready for her infusion. We use a plastic mat, pump, bag, neck cord, 20ml syringe, y tubing, transfer spike, journal, gauze pads, alcohol prep pads, paper tape, clear bandages, coban wrap, and hizentra.

The first thing I do is to lay down the mat and wipe it with an alcohol pad. Then I pop the tops of the hizentra bottles and wipe the tops of the bottles. Next I stick the transfer spikes into the bottles, which are covered with a flexible membrane. One at a time I draw the liquid into the syringe making sure to get as much liquid as possible. After that I attach the y tube to the syringe and prime the tubing by pushing the liquid almost to the end of the tubes. Then I wipe the cream off and clean the site with an alcohol pad. The ends of the y tube have a small needle on them, and a tab on each, side to hold onto. I stick the needles in, taping each one down with a clear bandage and pull back on the syringe to make sure no blood comes out. If no blood comes out I unscrew the plunger from the syringe and attach the pump. Then I start the pump. I also have to keep a journal of her reactions, lot numbers for the hizentra, and start and end times. Sometimes we cover the infusion sites with coban, which is a self adhering elastic wrap, so she doesn't touch the sites. Each infusion takes an hour. We try to keep her sitting so the needles don't move. When the infusion is over the pump beeps, I take out the needles and put pressure on the sites so they don't leak. I cut the needles off the tubing, put the needles in our sharps container, and throw everything else out.

We think she is developing an allergy to the clear bandages. We found some new tape that is better than paper tape and more gentle on her skin, but we need the clear bandages so we can see her reactions and to keep the numbing cream in place.

Her usual reaction to the hizentra is mild, think of an immunization, but with a teaspoon and a half instead of a small amount. She gets really big goose eggs. As her dose increases we will add more sites to spread out the liquid. Her current pump is electronic and will only allow for one increase in dose, then we move to a spring driven pump.

Today was the first treatment I did without another adult to hold her arms. She did really well. I think she is getting used to the idea, but is still nervous when I stick her the first time. She doesn't really feel it, so the second stick is easier. We started her infusion at 11:50, and now, half an hour later, she is up and playing.