We arrived home tonight at around 6:30pm, exhausted, emotionally drained, nervous, but relieved to be home. We are working on the dosing for Lucy’s anti-seizure meds. She has not had any more seizures since starting her on the Keppra and pheonobarb regimen, for that we are very grateful. She is, however, one miserable baby. Keppra has a nasty side effect of causing increased irritability, this is just what Lucy doesn’t need, more irritability. I have heard this side effect referred to as the Keppra attitude. She was one miserable baby before we started her on these meds. I’m not sure yet if the Keppra is adding to her irritability, or if it is something else, or if her behaviors are heightened because she is exhausted and in need of getting back into her routine. Because of all of these things, we were given the option of coming home tonight and work at sorting out these issues on an out patient basis. Although she is clearly not better, it appears that we have stopped her seizures. We figured if she is going to be miserable and screaming at least we can be miserable in the comforts of our own home.
Thank you for all of your thoughts, prayers, love, and support. I am staring at a large pile of laundry and an even larger pile of medical supplies, meds, and TPN bags that need to be put away. I think I’ll put the med supplies away tonight and save the laundry for tomorrow.