Today begins the second infusion treatment for Hannah.

We went to the outpatient infusion clinic at Children’s Mercy Hospital in Kansas City.

Hannah was given a choice between watching a movie, cable TV, playing with the Wii or playing with an iPad that the hospital provided.

Of course she chose the iPad and she is having so much fun that she doesn’t even talk to the nurses when they come in she is too busy playing games and reading books.

No kid really likes to have an IV. They gave her the choice of using a little vibrating thing or the cold spray. She chose both. She was very surprised that the IV went in so quickly and painlessly. They drew some blood to make sure everything was safe to do the infusion today.

The bloodwork came back OK so they started her first with Benadryl and Tylenol as “pre-meds” to help prevent any reaction to the infusion. The nurse said that that they were looking at 2 inflammation markers in the blood. One was elevated, the other was lower than when Hannah was here last..

Hannah thinks the Benadryl is “sour” so they gave her some apple juice.

They ran the tocilizumab for about 10 minutes and Hannah started coughing like she had a tickle in her throat … then said she was having trouble breathing and threw up a few times.

They discontinued the infusion and Hannah started shivering. They thought it may be a reaction so they gave her a steroid infusion and IV Benadryl.

She settled down a little and fell asleep.

The Dr. didn’t feel comfortable with the treatment and ordered the infusion stopped.

After a couple hours, Hannah perked up and started eating her “complimentary” lunch.

The Doctor came in and said sometimes the body can react to the second treatment this way. They began the process for us to get a new prescription.  This time for Anakinra. Anakinra is to be given by injection every day. (And its not very cheap either.)

We went up to the rhumatology depertment to get trained on how to properly administer the new medication.

What a whirlwind day! We are exhausted.