One week ago, she was home, not seizing, but still pretty sedated, and throwing up many of her feedings. Her vomiting was blamed on reflux and her sleepiness attributed to her seizure meds. She was expected to perk up after a week or so. Elizabeth was down with a nasty cold and a UTI that would thankfully remain out of her bloodstream.
Two days ago, Ava's feedings suddenly dropped off and she started sleeping a bit more and eating about half of her previous volumes. Ruby was up Much of the night coughing and miserable.
Yesterday, I looked at Ava and thought her head looked just a bit big and felt her fontanel (soft spot) and thought it felt full. (the soft spot bulges when the brain fills with fluid) Our helper, Miss M was sick with some sort of food poisoning. Hannah and Ruby were both up coughing and puking in the middle of the night.
Today? While Matt was a having a prescheduled outpatient surgery across town, a head ultrasound was ordered to put our hearts at rest. Only it didn't make us feel better. Ava's hydrocephalus was back. Her shunt was malfunctioning and would need to be "revised". Surgically. Today.
So we flexed. Miss M could stay an extra night. A friend took Elizabeth and Ruby to the Fall Festival at school. A friend came to sit with me while Matt recovered at home.
Initially the results of Ava's surgery were glowing. The surgery worked to fix the blocked valve and reduce the fluid pressure. She'd be transferred to a room for observation and we'd be discharged in the morning. But shortly after surgery, Ava began having seizures and having apnea episodes, where she would stop breathing and start to turn blue. It was horrifying. So instead we went to the Pediatric ICU for closer monitoring. Since arriving, she hasn't had any episodes of apnea or seizures, but when the rest of the anesthesia wore off, she clearly became uncomfortable and after trying all sorts of ways to comfort and hold her, she's now resting for a moment in a friends arms, getting morphine in her IV.
We need rest for our sweet one, and ourselves.