2013-11-13 The First Infusion

After doing research, we chose to do the subQ Infusion instead of IVIG. It is every other week instead of once a month. But...

- The infusions are shorter (1 1/2 hours at a time as opposed to 4 hours at a time).

- She can move around while it is being done instead of having to be monitored.

- There are less chances of side effects.

- They do not have to find a vein every month for potentially the rest of her life.

- I can do the infusion myself instead of having it administered, so it can be on our timetable and in our home.

- With the IV, since it is once a month, sometimes people have a "crash" sometime around the 3 week mark and your next infusion isn't for another week and a half to 2 weeks.

So, last Wednesday, I got a box with all of the supplies and medication for 2 infusions. Wednesday afternoon, the home health nurse came to show me how to administer it. She set everything up and put the needle in the first infusion site. I did the second site.

She said some people pre-medicate with Benadryl and Tylenol, but she likes to see how they handle it without meds the first time. Within 60 seconds, she started complaining about it itching. So we gave her Benadryl, and after 25 minutes or so, she said it didn't itch anymore. Next time, we will pre-medicate her.

This picture is during the infusion.

The first time, the nurse had to take her vitals and make sure she tolerated it okay, which she did. After that one time, we won't have to do that. Her pump came with a bag that she can throw over her shoulder or hook around her waist, and she can go about whatever she wants to do. Obviously she can't go play a soccer game, but she is not confined to the couch or anything.

This picture was taken a couple of hours after the infusion.

I am told that after 2-3 infusions, her body should learn to absorb the medicine a lot faster and it shouldn't be as bad. She was really sore the rest of the week, though she didn't complain much. But she voluntarily stayed inside from recess and didn't participate in PE the next day, so I know she was hurting more than she let on. By the evening, the swelling was already down significantly.

Sarah's next infusion will be the Tuesday before Thanksgiving. The home health nurse will come out just to watch me get it set up and start the infusion to make sure I am good with it. That will be the last time she will come. Then we will be able to do it on our own schedule.

I am told we should start to see a difference after 2-3 infusions (so 4-6 weeks). However, they start at a certain dose because of her weight, but that doesn't mean that is HER therapeutic dose. So if it doesn't work, that doesn't mean it won't work (if that makes sense). They may have to up the dose. The pharmacist for the home health company also told me that she should only get one to two infections PER YEAR! I cannot even imagine what that would be like with her!