September 23 - Infusion #16

Today started very early in the morning! Because I needed Mom to help me with this last minute change in plans it wasn't possible for us to go up the night before, so we were up and moving at 5am. At 6am I swooped Levi up out of his bed still in his PJs and placed him in his car seat, hoping that he would go back to sleep for at least part of the drive. But that was not to be the case. He was WIDE awake and talking for the whole drive. :)

We stopped at the rest stop about 20 minutes from the Hospital to put the numbing cream on Levi's port. He did great, was a little confused why we were doing it in the car, but he let me put it right on no problem.

We got the the hospital and changed Levi into clothes and then headed in. We pulled in to the parking garage at 7:59 for an 8:00 appointment. Couldn't have asked for any better then that. We registered at the desk and then headed down to the pedi wing. Levi was very excited to have a 'key' (the purple badges they give the adults to keep track of where they are)! We got out back and Nurse K was there. We talked to her for a minute about what was possibly going on. And pretty much we all just said we didn't know and it didn't make sense at all.

The plan was to access his port and pull blood work and then not start anything else until that came back (to make sure that he hadn't gone way up over night or it wasn't a systemic lab error at our lab, or something else). So we got his port all accessed and then headed to the playroom to play. Levi was definitely coughing and sneezing more today then some days. Levi had a blast playing in the playroom with Grammie and showing her where everything was again!

Nurse A overheard me telling Levi that the markers still weren't available for the white board and she came in and found them for us. So he had fun coloring on that for awhile.

Levi's blood work came back and his count was 84. So we made a good call to come up and get another infusion. Since the count was not below 50 we would not be being admitted!! Just another infusion and then home for monitoring.

They got the Benadryl started in the playroom and we pushed that through in 5 minutes instead of 10 accidentally, but Levi did fine with it. Then we had to wait for that to start working before the plasma can be started. Levi wanted to stay in the playroom and continue to play and he was doing very well with sitting and playing with only a few toys at a time. We did about 10 puzzles before he got tired of that! Then he played with the little people house and plane and had a good time with that.

Nurse K brought his plasma in when it was ready and we started that in the playroom as well since he wanted to stay. They even did his vital sign check in the playroom! The nurses are so accommodating for the kids, it's so nice! After a little bit he was getting more and more crazy in the playroom so Mom and I made the decision to take him back to his room and see if he would settle. We got him a snack and some juice and he set in the chairs all by himself and we turned planes on.

For a few minutes it seemed like he might fall asleep, he even asked for a warm blanket (usually I have to kind of push it on him).

But sleep was not to be in our cards! Once Planes finished he asked for the "Crazy People" so we put that on and he started to get a little crazy himself. He didn't want to sit still anymore, he was just kinda crazy. We got him some Mac&Cheese and that settled him for a few minutes, but he was definitely over this whole sitting thing.

Finally the last buzzer went off and the infusion was done!! We de-accessed his port and headed out, making sure to put his key in the box! (his favorite part!) We put him in the car and thought he would quickly fall asleep. But again that was not to be the case. We got off the highway in Concord and since Levi was still awake Mom and I thought we would stop at half-way McDonald's for lunch/dinner since Levi hadn't eaten lunch, and Mom and I hadn't eaten anything at all. I looked back at Levi when we were about 8 minutes form McDonald's and he was still wide awake. I looked back when we were about 5 minutes and he was sound asleep! Good timing kid, good timing! So we drove the rest of the way home.

Plans: Monitor Levi closely over the weekend and call the on-call doctor if we see anything out of the ordinary. Do blood work on Monday to make sure that his count was rising instead of falling.

**Thank you Mom for coming with me! I wouldn't have been able to do this day without you! I really really appreciate it!!**