Sunday, December 30, 2012

Puppet show

Here is the "puppet show" we did for the vEEG techs...
You see it as they would see it... kinda
and the storyline is left up for interpretation...

Saturday, December 29, 2012

Seizures = stay #25

So we made it a WHOLE MONTH!!!
We were released from the hospital on Nov. 28th
and we didn't have to be admitted again until Dec 28th!!!! 
Let me catch you up on why we are back.
On Dec 4th Lily had a full shaking/twitching/ eyes rolling/face contorting, heart racing seizure 
(actually I am supposed to say "seizure-like event" because she hasn't been diagnosed with seizures yet... but for purposes of this blog I am just gonna call them seizures...)

So She had this "seizure" and I called her Neurologist IMMEDIATELY
to see what they wanted me to do because in the past when she had had
probable seizures they just looked at her in the ER, wasted 6 hours of our lives and sent us home.
I didn't see why this would be any different so I called her Dr.
Well On DEC 7th they finally called me back and said they wanted to do a 3 day EEG, 
and they would set it up and call me back.
I waited a few days and no call so I called them.
No call back.
Lily had another smallish seizure in her sleep.
I called them and
Finally on Christmas Eve Lily was acting weird, really really uncharacteristically hyper/obstinate and almost aggressive.
Then before I knew what was happening she was twitching where she stood then went rigid and fell like a tree, breaking her fall with her face.
She was unconscious but breathing and was twitching all over.
When she woke up her face was swelling up and she was acting like she had a concussion so we took her right in.
There was no concussion and no broken bones so they sent us home.
I called Neuro to let them know. 
They didn't call me back.
I decided I was done playing games with Neuro and called and Emailed Our AWESOME PCP
She emailed me back and said she had contacted the on-call neurologist and He would call me.
He did call and said he wanted to just try some anti-seizure meds.
Well I told him to call it into PCH's pharmacy since we had a GI appointment there 
that morning anyways.
We went to our GI appointment and Lily started acting odd.
I looked at Lily's nurse and at her GI and said "she's acting like shes gonna have a seizure."
Within 2 minutes
she was rigid and was turning blue and she went unconscious
it was only for a few moments but it was long enough to scare her Dr.
She sent us right to the ER.
While this was happening Lily's PCP had been trying to contact me to tell us to admit her to the hospital for a multiple day EEG anyways.
Her PCP was sick of waiting on Neuro too,
so we went right to the ER where they admitted Lily for hospital stay #25
The started the EEG with Video this morning.
So We are just sitting here waiting for the EEG machines and Video monitors to do there thing.
I must admit It is odd being watched 24/7 by video. 
The Little camera follows Lily's every move...
We may have to create a puppet show for the poor person sitting watching us tomorrow.
It really has to be boring watching us... 
Yes I think an impromptu puppet show is in order!
:) even if it is annoying to our "captive audience"
I am sure it will entertain us and make Lils smile!