I called this post The Play Room. Graham’s favorite room in the hospital is the play room which is filled with toys. The team is trying to get him there this week. While we wait, his own room is the definition of a play room. Toys EVERYWHERE (in a good way).

We continue to have stable days in the PICU! Graham’s voice is almost back to normal and his muscle strength continues to improve daily. We call him spicy most days because when people come into the room, as soon as they say “Hi!”, he will say “Bye!”. It has become a rule that he cannot say goodbye to people unless they leave. Learning to parent a 3-year-old boy in a hospital with two large devices coming out of his body is tricky. Candy, snacks, hotdogs, whatever he wants whenever he wants so we can keep his calorie intake high and encourage him to eat by mouth!

We have started a project to get flashcards of all of his providers that come into the room and support him. This has been a good icebreaker for Graham – the providers write their name on the board, Graham will spell it back to them, say their name, then take a picture. We try to review the pictures once a day so he can continue to get familiar with everyone. It takes a literal village to support kiddos in the hospital. We haven’t taken pictures of half of his primary nurses, and we already have 20+ caretakers. 

We received a book called Ben’s Zipper: The Story of Ben’s New Heart. It tells the story of a baby elephant that needs a new heart. Graham has requested to read it several times now. It parallels Graham’s heart journey, and it seems to be a conversation starter about what is happening to him.  The book tells us that Ben’s new hearts come from Angels. I think it is a beautiful way to explain it – it is simple but so very true.  Graham has started to echo that when we talk to him about his new heart. 

Despite the heaviness of his current situation, most of our days are lighthearted and fun. He laughs and plays a ton. The staff engages with his shenanigans – he became a doctor yesterday (lab coat, stethoscope, badge, and all), he makes phone calls and insists on holding the charge nurse beeper whenever he sees it. His joy keeps us all going. It’s infectious. 

We continue to feel the extraordinary love from the prayers, support, and outreach you all send.