So we go home from a 9 day stay in the hospital only to show right back up 24 hours later.
Frustration Hunts Me Down.
Emily was doing great when we went home. We thought her ketogenic diet was working well and we actually got our hopes up (again) thinking we were on to something this time because she went from 8 pm Wednesday night to 11 am Thursday morning with no seizure activity.
11 am shows up and even then Emily only has a couple of small episodes, both under 4 minutes a piece, and we still have high hopes. But then 2 pm shows up and our hopes are crushed (again).
Emily had an episode at 2 pm that lasted a total of around 3 hours off and on. (Yeah I said 3 hours!) We gave her all the meds we could safely give her at home and when we reached our max limit we had to call an ambulance. At one point Emily fell asleep because of the high dosage of meds (klonopin) we gave her, but even in her sleep we could see she was having seizures!
Fast forward to around midnight in the hospital and Emily starts having another "episode". And yeah, this one lasted around the same amount of time as the one at 2 pm!!! Only this time Emily has been given even stronger doses of medicine (I.V. Ativan (twice), Diastat and Phenobarbital) and it still took so long to bring her seizures under control. She is out of having seizures at this moment (fingers crossed) but she is WIDE AWAKE. No one who has been given that much medicine should still be awake. You and I would be out for a week if given that much medicine but for some reason Emily has such a delayed response to medicine. It has everyone confused.
So here I sit once again in the hospital with my baby girl next to me, writing another blog post about the disappointing and devastating journey of Infantile Spasms. I hate this with a passion. I wish a cure would be found somewhere. I wish what works for some kids worked for Emily. I wish she could live the same life as other kids her age and I wish like heck we could be done with this, and soon.
The End of an Era
3 years ago