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”
Author: Mary Claire Hill
Going Crazy
We're all going a little bit crazy here in room 550 of Mount Sinai's Kravis Children's Hospital. The heater is knocking (really, I think there's a little man in there with a hammer banging on the pipes), the alarms are beeping (every time a medication finishes the dang pump beeps till the nurse turns it … Continue reading Going Crazy
Ups and Downs
Lack of sleep and the uncertainty of the hospital schedule is really throwing Oscar for a loop. His free flowing tears and argumentative tone had most people assuming he was in serious pain, but the real challenge was the sleep deprivation combined with uncertainty around medications, the constant flow of doctors and nurses, and a … Continue reading Ups and Downs
A Day of Progress!
Oscar started the day heavy-lidded and drowsy from the medicines. He was slurring his words yet still insisting he wasn't tired by repeating, "I'm awake" anytime we commented on his sleepy state. Around lunchtime they lowered one of his medications to lessen the sedation and the difference was amazing. He opened his eyes, initiated lots … Continue reading A Day of Progress!
Out of Surgery and Resting
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
In Surgery
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
oh the anxiety
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
The Spirometry Test
It's amazing how your vocabulary expands when you have a kid with special needs. When Oscar was in the NICU I remember feeling like I'd been thrust into this new world of words that I didn't comprehend...hypotonia, hyperphagia, hypogonadism...and then later I was met with an onslaught of developmental terms: processing speed, receptive language, motor … Continue reading The Spirometry Test
Pre-Op Appointments
Our week was filled with the tests and medical appointments required for surgery. A visit to the pediatrician for an EKG and medical clearance. An appointment over the hill for a pulmonary exam and spirometer (lung capacity) test. A trip to the local hospital for a series of xrays (just one month after the last … Continue reading Pre-Op Appointments
Surgery Countdown
Oscar's spine surgery is one month from today, on February 8th. He was first diagnosed with scoliosis when he was two, a minor 10 degree curve that "just" needed quarterly monitoring. Seven or eight orthopedic surgeons (in five different hospitals and three different states) and two stints of bracing later, he's progressed to a 39 … Continue reading Surgery Countdown
