We got the news around 10am yesterday morning — The radiologist confirmed that Oscar’s GI system was sluggish but not in crisis (always a concern in PWS) and Dr. C agreed that we could go home!
While the paperwork was completed we distracted ourselves with a makeshift “book club”. We’re reading Game Seven by Paul Volponi about a Cuban teenage baseball player whose father defected to the US six years ago and is currently a pitcher for the Miami Marlins. After a few chapters I convinced Oscar to walk the halls, hoping to ease his belly pain. Engaged in our book discussion (plot predictions, analyzing perspectives, and historical context) he walked for half an hour! The nurses and residents on the floor caught snippets of our conversation as we passed and smiled. Apparently most spine surgery patients can only walk about five minutes before they need to rest…but they probably weren’t in the middle of a really good book.
The belly pain persisted all morning but one by one his tubes were removed. The long plastic epidural was slowly extracted from a teeny hole in his upper back. The strips of tape on his hand were gently peeled and the IV removed. And then suddenly free of the IV pole he started exploring. He traveled over to the window for the first time and gazed out upon Central Park, immediately spotting the playground right across from the hospital entrance. “No fair!” he balked. “That looks so fun and I can’t go!”
It was 2pm before we escaped. Our nurse came back from lunch to find Oscar already in the wheelchair outside our room, waiting, while I gathered up our bags. We got our instructions — he’s going home on only tylenol and gabapentin (a medicine we started a week prior to surgery to calm the nervous system), which is incredible. We do have backup narcotics that we’re hoping not to use.
So here we are, “comfortably” installed on GrandMary’s couch getting to watch anything he wants on TV. Unrestricted TV rarely happens in our house…and when I reminded him that we were finally at that point in our journey — the crazy excessive TV watching I’d been promising him all along – he replied, “Yeah but when you said I could lie here and watch TV all day I thought it would be much more pleasurable!” If we could only get rid of the darn belly pain!
Thank you again for all the notes — I wish there was a way to reply to each one, and even better, a way to share the smiles on O’s face as I read them to him. He’s loved every single one.
One thought on ““Home””
Mary, your pictures and story are so upbeat! Oscar’s face is pure joy. He’s a hero. Glad he was able to tolerate the Gaba. It made both my daughter and me really crazy.