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.

Hannah was feeling a little better and wanted to go and see the hospital.

We went to see the “Stars”, the “Train Room” and a few other places.

Hannah got tired very quickly and was ready to go back to her room to rest.

We also got word that the Dr. wanted to keep up 1 more day. Bummer!

Hannah got her 2nd wind about midnight of the 19th and is not enjoying jello and gold fish.

Mom is tired, and all medicine has been given, Hannah’s fever is still at 101.  The itching is increasing and we are ready for are next dose.  Enjoying another midnight snack of yogurt she didn’t eat from supper.

It is 4:30 am Hannah hasn’t slept much going to try some more benedryl since it is not time for the other itch medicine, she is having a snack and juice and watching cartoons.  Thank goodness for Nick Jr. and Disney.

At 8 am Hannah is tired and cranky and mom is tired, it was a long and rough night lots of catnaps.  Hannah had her first tantrum mom tried not to laugh but it was so cute, we had the stomping feet and everything.

Her iv vein failed after the strong dose of steroid so the nurses will need to put another in before Hannah’s next dose of steroid today at 4 pm.  Get to visit Rosie the Hippo again.

Hannah ate fairly good for breakfast, french toast sticks and bacon.

Dad’s brother and family came to visit and offered to take “R” home with them for the night.  Little sister was getting bored and had more energy than Hannah could handle.

Hannah has slept off and on all day, we haven’t been running a fever since morning.  She received her 2nd dose of Steroid at 4 pm and slept through the whole process.

She woke up ready to go for the day around 6:30 pm and very hungry.  That’s the steroid in her, it makes you very hungry and gives you lots of energy.

It is 11:30 pm and Hannah is not able to sleep, another long night ahead of us.

Each day began about the same.

• Hannah got to order her own breakfast. It was always french toast.
• A group of 6-8 doctors came in
• One always briefed the others about Hannah’s symptoms
• They all took notes, some asked questions
• Then we waited to meet with Dr. Kessler

They delivered a large dose of steroid by infusion every afternoon between 3 and 4pm. We always wondered why this couldn’t be done in the mornings. It always seemed to wake Hannah up just in time for bed … 🙂

Mom stayed in the room only to leave to take a shower in the Ronald McDonald hospitality room at the hospital or go to the cafeteria to grab a bite to eat.

Dad wandered the hospital from time-to-time, but stayed close by.

This is Hannah’s Dad.

I wanted to tell you a little bit about my experience at the Ronald McDonald House Charities (RMHC).

I heard about the RMHC many times before, online, at the restaurant, at the balloon festival in Topeka, but really didn’t know what it was all about.

The RMHC provides a place to stay while your child is in the hospital. It doesn’t really sound like much, but when you have a child in the hospital, it really makes you appreciate the ‘normalcy’ of coming to a clean, quiet place to sleep and try and take your mind off of your current situation.

I heard about the RMH from the “Welcome to Children’s Mercy Hospital” video we watched right after we got settled in Hannah’s hospital room.

I called them to see if by chance, they have a room available for me and Hannah’s sister to stay overnight. They did!

“R” and I checked into the house and found a full lasagna spread in the kitchen with people serving up plates upon plates of wonder food. After what we had gone through, we were very glad to have a home cooked meal.

The rooms weren’t anything special, but reminded me of my old college dorm room at KU. It was actually a little nostalgic.

I know this doesn’t really reflect my true feelings, but the people running the RMHC really have a soft spot for hurting families. Me and my family are very grateful.

Me and “R” stayed the night and woke up on Saturday morning and went back to the hospital.

I ended up staying 2 more nights and checked out when Hannah checked out of the hospital.