December 5 - Infusion #35

December 5 - Infusion #35

We got over to the hospital and were running a few minutes behind since Levi had slept in. Thankfully they are never on our case over there for being a little early or a little late! They understand kids and that morning don't always go as planned. We got our stuff situated in the jungle room and Levi headed in to the vitals room to get his first set of vitals for the day. He did a great job sitting still and got the first set on the first try! It was a great start to the morning.

Then he was off to the playroom to play. He was the only one in the playroom and he bounced around from thing to thing. Playing with the train, laying on the floor, reading a book, playing with the doll house, and the big truck.

Then it was time to get accessed and get his blood work going. We had the older nurse today, she is such a sweetheart, and is very good with Levi! The port access went well and we were back to the playroom before we knew it. We are waiting for labs to come back today just to confirm that nothing crazy happened over night and he does indeed need an infusion. Levi had a blast playing in the playroom. He found the colored ball and made his rocket ship again!

"5...4....3...2...1... Blast Off.... Another Rocket Ship Run"

Then it was time to get bennadryl started and the doctor came in to look at him. Levi didn't care that the doctor was poking and prodding him. He was annoyed when the doctor tried to be silly. He asked Levi where he listened to his heart, and Levi pointed to his chest, and then the doctor went on to say "on your foot" and "in your ear" and "on your knee" and each time Levi kept pointing to his chest and getting more and more frustrated. As much to say, I pointed to the right place the first time, get with the program dude. Eventually he just gave up answering the doctors questions and drank his drink. The doctor is great with kids and likes to play with them which is nice, Levi just wasn't having it!

While the Bennadryl was running Levi asked if he could play with play dough. I thought that was a great quiet chair activity and we brought it in to the room. Levi had a blast playing with it. Mixing the colors some, but playing! And it really helped to pass the time.

Dr. K came in to check on him. She also brought the fact that his platelet count was 35! Yup another huge overnight drop. Also confirms that we will definitely be here for at least 2 days as he will need at least 2 infusions to bring the counts back into the normal range. Dr. K did a quick check of him. He was ok with that, but not super excited as he wanted to play.

After Dr. K left Levi wanted to make the solar system, so here is what we made. The sun is on the right in the picture and he made every planet. He made the rings for Saturn and Uranus himself, and if you look closely you will even see that Jupiter has it's red spot.

Then he insisted that we make the dwarf planets (the 5 red balls at the end) as well as an astronaut and space ship. I am no artist!! So take my astronaut (red guy near Levi's elbow) and spaceship (blue thing behind saturn and uranus) with a grain of salt, but he was excited for them!

After he finished with his playdough we settled in for some movie and popcorn. We started by watching Cloudy with a Chance of Meatballs.

We got about 2/3 of the way thru the movie when it was time for Jay to head to get lunch. Levi wanted a burger and some fruit so Jay headed down to the cafe. He hadn't been gone more then 10 seconds when Levi told me that he didn't like the movie and wanted to change. I was shocked. Jay had convinced Levi to watch Cloudy with a Chance of Meatballs by telling him that it was his favorite movie. I couldn't believe that Levi set there and watched it the whole time while Jay was there even though he didn't really like it!! That was so sweet of him! We changed the movie to the emoji movie and Levi was excited!

He ate some lunch, but not much, but that isn't overly surprising. We have determined that when his counts are low he doesn't eat as well as he normally does. It must have something to do with how he feels. Some day he will be able to explain how he is feeling and we will know that all these things really are related or aren't.

The infusion went on for another hour and a half. We finished the emoji movie and then the infusion was done. The end of the infusion was rough because Levi was tired and antsy. But it went well overall. We talked to Dr. K about tomorrow. She gave us a choice of all kinds of times. We chose 9:00 in case Levi slept in again.

Then we headed out. Levi was in pretty good spirits to be leaving since he knew that we were headed to David's House to play. Little did he know that we were headed for a nap!

Next Plan: David's House tonight and then another infusion tomorrow more then likely. If his counts are over 100 then he wont need a second one, but anything less then 100 and we will be getting another round tomorrow.