Ok ... the past couple of days Ava has had that metallic smell to her again. I have been sleeping in her room the past couple of nights expecting an episode.
Abut 3:30 this morning I just needed to get some sleep so DH took over. When he watches her at night, he is able to go to sleep and wake if he hears anything. I tend to need to stay awake ... or at least my brain thinks it does.

7:30 I woke up and went to check on DH and Ava. He had Ava right next to her.
( we now have a bed set up in her room) Said she was fine. Her back was to him, I peeked over to be sure she was ok and sure enough she was seizing. THIS TIME, we were not giving any obvious clues such as her vomiting or trying to clear her throat. YIKES! How horrible is it she can be right in DH's arms and he not know she is seizing!
This one looked quite yucky! ( I know they all do)
She was trying to talk but couldn't. She had no motor function at times. So scary. When she looks like this, it is so hard for me not to wonder if she is having another stroke.
Gave the diastat. Thought it was helping then she slipped back into it. Called 911 and gave second dose. Again, seemed to be coming out of it. Lot more responsive by the time EMTs arrived.
Got to the ER and the doc thought she was probably PI .... I HATE HEARING THOSE WORDS!
I knew in my gut it was not over. A minute or so after the doctor left she slipped back into. Could not respond by the time he came back. They did the usual. IV Ativan labs etc. THIS TIME, Ativan was not working. Gave a second dose of ativan
, still not working. Now I see these guys are getting nervous.
Gave phosfentynoin. This is the first time we have gotten to that point. Our protocol only goes to give the phos if diastat and ativan fail. Guess we will have to revise our protocol.
She came out of it after the phos. However, pupils are still dialated. They are not sure if that signifies anything or not. her pupils typically dialate w/ seizures.
We are home now. If she starts seizing again today, they are going to life flight her to Boston.

So our plan for night time monitoring needs adjusting. Simply watching a video monitor or even having her in bed with us failed.
Time for the pulse ox and HR monitors as well as having some O2 at home. Neuro does not like this idea, but pedi said she would help us with it.
Hopefully our neuro will not hold it against us. It absolutly needs to be done. This is crazy!

Hate this so much. It is exhausting.