Extra Calorie Packed Lunch!
8am on the 19th of July, I get a phone call from Coen sitting in his hospital room. “Can you bring me in some clean clothes?”. I had to think again about what the time was. Coen is never awake at this time let alone able to communicate. But there he was getting ready to attend school for the first time in 4 years.
He was admitted 4 days prior to The Royal Children’s with a very tight chest and coughing up more gunk than we are used to seeing from him. The doctors decided to give him the maximum dose of steroid for his weight to try to elevate the inflammation in his lungs causing the tightness and affecting his ability to breathe. Coen is on a permanent 10mg dose of Prednisolone. It was quadrupled to 40mg which led to my 8am call 4 days later.
When I arrived at the hospital with his clean clothes he was up and showered. He had packed his own lunch of hospital issue Jax biscuits, Choc milks and Twisties. He used the cardboard lunch pack box that the CF’s ‘extra calorie’ foods come in as his lunch box. I had to laugh when he sticky taped it shut.
He pushed me out his hospital room in a rush to go, school was about to start. “What about ward round?”, I asked. “No, all sorted, they want me to go to school instead” he said. Off we went.
In the car I asked if he even had a pen. “Na, someone will have one I can use” he said. He rolled in to the school on his scooter. “I’ll catch the tram back to the hospital when I’m finished” he said. The school is only 2 tram stops from the hospital. He was taken off to class and I was left feeling like a Mum who’s kid had started his first day of Prep.
Mark and I picked Kai up from his school that afternoon. Fortunately both Coen’s school, University High, and Kai’s school, North Melbourne, are only 2 blocks away from the hospital. We all went in tot he hospital to see Coen and find out about his day and half expecting him to be asleep from his day.
Coen was sitting on the lounge in his room (he rarely moves from his bed) and was busy doing something. Over the next couple of hours we listened to him as he rattled off a minute by minute recount of the day. Got to love Predniolone! The rare times we see Coen the way he deserves to be all the time.