COVID Update

Originally posted February 28, 2021 -

Jacob continues to do well and is still at home.  We're all pretty exhausted, but he is mostly off the oxygen even though his cough sounds worse.  It's easy to tell he is feeling better and we are getting some smiles.  

His seizure activity was reaching an alarming level a few days ago so his neuro team put him on clonazepam for a few days and set us up with diastat as a rescue med.  Although his seizures have always been frequent (dozens every day), they have been short in duration (10-20 seconds) and have not needed a rescue med to bring him back to us.  Unfortunately even before his illness we were seeing some seizures last several minutes and now with being sick they are lasting more than 10 minutes.  It feels like an eternity when we are watching our baby jerk and twitch and there is nothing we can do for him, even though they don't seem to cause him pain.  For now we will use the medicine to bridge him over this illness and keep working to regulate his body temperature which is a struggle right now.  His thermostat isn't working at all!

It takes an enormous amount of advocating and coordination to get medications an equipment for him at home and keep him out of the hospital unless it's absolutely necessary.  We believe this is the best thing for him even though it can be overwhelming to manage his care and toe the line of what we can control at home and what requires more support.  The stark reality for Jacob is that his seizure activity and associated problems will ultimately increase no matter what we do, so we work hard to manage his symptoms and keep him comfortable without subjecting him to any procedures or medications that aren't necessary.  It's always a guessing game and a risk vs. reward scenario.  

We are grateful for your prayers and so thankful that Jacob is feeling better.  We will give him this week to rest and then hopefully start his therapies again next week.