Earlier my son was whistling a tune in the shower, like he hasn’t got a care in the world, and it boggles MY brain to think 4 days ago someone opened his skull and cut out a handball-sized chunk. But here we are and we are celebrating!
Quick recap: 5cm grade 4 left occipital AVM, no bleed. 4 onyx embos over 4 months, followed by 6 hour resection. Post-op angiogram show zero residual AVM. Children’s Hospital in Pittsburgh by Dr Stephanie Greene. Embos and angios done by Dr Sandra Narayanan from UPMC Presby.
The giant zipper across the back of his head should come with its own trigger warnings, but except for the first day of recovery when my son still had fentanyl when needed, his pain has been managed with alternating acetaminophen and ibuprofen and he’s never reported pain level over 1 or 2. He’s got a low level headache and is just starting to get some nerve pains. The incision is sore to touch, of course. Still pretty raw. We can see a little more swelling right at the bone flap and it’s tender too. But he can lay back on pillows without pain.
While 100% better than discovery by bleed and all that might have been, he does seem to have lost his entire right field of vision in both eyes (right homonymous hemianopsia). He has regained a little clarity at the edge of that margin and as days 3-5 are peak swelling, some more may be regained. We certainly hoped for less loss but he’s navigating the early days of it well and we will hit the ground running with a good vision therapist.
Physically, he’s truly doing remarkably well. First 2 days post-op he felt (and looked) like he’d been hit by a truck. Brain muddled by adapting to the significant blood flow changes happening and also wearing off the anesthesia. Awake maybe 3-5 minutes between naps. But day 3 started a big turnaround and by today his equilibrium is back and stamina is impressive. He’s been awake for 10 hours, up and down as needed, walking himself to the bathroom, needed to sit in the shower but only needed help with shampoo around his incision. Has been playing with his Nintendo switch for 2 hours now, so none of the eye sensitivity some have had. He’s in bed, but not tired enough to sleep. Not at all what I expected this soon out!
Psychologically he knows to milk our sympathies as much as possible and has asked for a new pro controller for his Switch, knowing my husband and I would say yes to anything right now. Right on track for a 15-year-old.