I was lucky to have gone in the hospital a full 4 years after my diagnosis. I was seven years old and in the first grade. My cleanout was scheduled for the first two weeks of school. It didn’t really hit me too hard that I would be missing my first two weeks in the big school, with a full 6 hour schedule. I had to do what I had to do.
I was in a double room with a little girl who loved to watch Nickelodeon. I was shy, and never said much to her. The hospital was scary. Getting my picc line placed was frightening. I didn’t know what was happening, it was a first time for everything. But I had my mom right by my side the whole time to ease my fears. I got to pick a new color to wrap my picc line in every couple days.
The hospital turned out being more fun than expected. I had visitors almost every day, and I got so many cards and gifts. I had tons of stuffed animals once I went home and all sorts of things to keep me busy. I kept a journal and had everyone sign it when they came in. My favorite place was the “Activity Room” where I could go and play with other patients and we would show off our new colors over our piccs. There were movies to watch and all sorts of toys to play with. We did arts and crafts with the child life specialist too! I remember they had the aquarium come in and we could play with the star fish and hermit crabs, and there was even a magician! There were, and still are, clowns that came around doing crazy things dressed as doctors. They helped to make me smile!
For my physical therapy I would go exercise down this long hallway with one CFer who was a little older than me. I can only remember that big hallway and a huge ball that we did some sort of obstacle course with. I also had Chest PT every day, and I complained that some people did it too hard, but that was my first instance of just sucking it up.
The best part of being in the hospital was going down to the stage at children’s, putting on the jukebox, and dancing. I loved the freedom I had when I was little in the hospital. I could pretty much go where ever I wanted, I could even get a pass and go across the street to the food court! Now, since I have cepacia, I’m confined to my room and when I do go outside I have to be careful with purell and not touch anything. It was really boring as I got older and couldn’t go outside my room, but now I’m so lucky that I get to do my cleanouts at home, thanks to my awesome nurse Mom who makes it so easy!