Aftermath update 6

From Charlie’s private Facebook page (yeah, he’s that cool!)

UPDATE APRIL 18:

We’re doing care by parent tonight and then Charles will be coming home tomorrow afternoon if all goes well!

His phenobarbital levels are still a touch higher than “therapeutic”, but since he’s not bothered by them the neuro team is OK with his dosage. He’ll outgrow it quick enough anyways.

Charlie passed his car seat test with flying colours (he’s still sleeping in it as I type this).

We were able to talk with the neonatologist more in depth and clear-headed today, so we’ve got a better picture of what Charlie’s long-term prognosis will look like.

Charlie can hear & see. The part of his brain that was injured is called the perirolandic region, and is responsible for lots of motor control. It is possible he can rewire to learn the skills he needs, but only time will tell. There are also small spots of damage to the midbrain and cerebellum. It’s likely that given the areas of damage, Charlie will develop epilepsy as he gets older. We’ll need to keep a close eye on any seizure activity and he’ll receive medication as/if needed.

This isn’t what we wanted for Charlie or ourselves, but we’re going to love the snot out of this little guy and give him the best chances for life that we can. The doc said that the more we could stimulate Charlie the better the potential outcome, so we’re going to treat him just like we did Declan and hope for the best. One day at a time. You keep showing ’em how we do, bubba.

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