From the moment we awoke yesterday, we were hell-bent on getting out of the hospital. Oscar's 6am chest x-ray was clear, so we assumed he'd be released by lunch. But Dr. Thé decided to clamp the chest tube and re-check the x-ray six hours later to be positive there was no pneumothorax. Oscar looked so … Continue reading and he’s out!
Oscar is a huge Oakland A's fan. He doesn't go anywhere without his A's hat, and is always wearing his A's socks, t-shirt, or sweatshirt—and sometimes all three. His bedroom is papered with player posters pulled from Athletics magazines and his bed is topped with the fleece A's blanket that Ruby made him a couple of years … Continue reading Oscar and the Oakland A’s
The last 24 hours have been all about balancing pain management and GI symptoms. We're trying to use fewer narcotic pain meds to prevent all the gastric issues he experienced last time. But that means that instead of pain levels of 0, 1, or 2, he's been getting into the 4-7 range frequently, with 4 … Continue reading Balancing Acts
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 … Continue reading “Home”
All went beautifully in surgery! Our trio of doctors kept us updated on Oscar throughout and sent pictures of his corrected spine once finished. They were quite pleased and optimistic --Oscar's curve was surprisingly "flexible" which allowed them to correct his rotation as well as his curve. As we expected, they purposely left him with … Continue reading Out of Surgery and Resting
Oscar's last words as he wheeled off into surgery at 8am this morning were Go A's! (And then he added "I'll be ok Mom!") The anesthesia had started to kick in - his eyes were wide and woozy and we were feeding him fun phrases to repeat, but the little message to me was all … Continue reading In Surgery
Three weeks ago it was Oscar who was struggling with anxiety around the surgery. He was full of questions from breakfast till bedtime. "I'm worried it will hurt." "How long will I be in the hospital?" "Who's coming to visit me?" "When can I eat again?" "And the worry that lasted one entire week: "What … Continue reading oh the anxiety
this boy 