So we are back in the hospital again. We came back on Thursday morning.
Emily began to seize right at 5am, after not sleeping all night again. I gave her ativan a few minutes in and nothing, repeated in 30 minutes, still nothing, repeated again 1 1/2 hours into and still nothing.
I called on-call neuro (love her too!!) and I was told to give her her morning dose of phenobarb early wait 20 minutes. Still not stopping I called back and was instructed to give her evening dose of phenobarb and if that did not stop in 20 minutes I would have to bring her in.
I waited a little longer because I really did not want to come back but she was still seizing, slowing down, but still seizing.
I thought she stopped when we got into the parking garage, we waiting a little bit but she had another one so into the ER we went.
Luckily the on-call neuro called ahead and we went straight to admit express, which means we avoided the ER for the most part.
By this time she was done with that cluster of seizures it was almost 3 1/2 hours long.
We talked with the neurologist about her not sleeping and everyone agreed we need to fix that and hopefully if we get her sleeping under control that will help her seizures that happen when she goes long periods of time without sleep.
So last night she was supposed to get the new med, chloral hydrate, to help her sleep but she had a pretty bad round of seizures again and we had to give her quite a bit more meds so we could not give her sleeping medicine on top of it. So we needed to stay another night to give the chloral hydrate in the hospital to see how she reacts to it first.
We did get some good news though. We found out today that our private insurance approved a private duty nurse for 8 hours a day, 7 days a week for 30 days! That is a huge deal because the home health company said this does not happen often. They are coming out the beginning of the week to meet with us and see what our needs are. This means I can sleep soon!!!!
So we are hoping for a better night than last night.
I did get a couple of pictures of her smiling in her sleep. She is just too darn cute!