Epilepsy Awareness by Epilepsy Parents

Great video from 

Epilepsy Parents ( I found them on Facebook)

Enjoy

Chances

Feeling a little emotional today

and

this song just hit home so I thought

I would share it with you all

Just plain exhausted, but finally HOME

Arthur got discharged this past Thursday. The Neuro team asked how we were doing and I said,

" We would really like to go home."

They talked about needing more seizures on EEG for pre-surgical testing, but since I wasn't seriously

entertaining the idea of surgery if was fair to ask to go home.

So he had a fancy MRI done and we were out by 6pm.

It was SO nice to be home. Got one evening with the family and the next day was

a field trip and back to work at the hospital for three straight nights. UGH

Lets just say I have not caught up on my sleep AT ALL

Hospitalizations and the worry and fear that come with them, drain everything out of you.

I spoke with Arthur's neurologist via email on Friday and she said

all the neurologists, neurosurgery, etc meet on Mondays.

The go over all tests results and decide on a plan.

Then she will call me on Monday.

They still have to fuse his MRI to his PET scan, which I looked up and it's a pretty cool thing. You

really can see so much more detail that way.

So for now Arthur is back on the same meds at the same dose. We patiently wait till Monday for the results of our "week  get-away" at the hospital.

AND

Yup, you guessed it. NO SEIZURES

Life in the hospital....

Hospital Adventures

 My luxurious bed for 5 of the 7 nights

 Even the call light/remote got a mustache :)

 Not gona get out of homework

The rock star at PET scan

~~~~~~

This is a picture I took with the Ipad

This is why I barely slept most nights.

I don't know exactly what to watch for, not like it matters.

Being able to watch this 24hrs a day for 7days was....

good and bad

It was a long stay, but we tried to make the best of it

Day #5 almost over and STILL here

I really thought we would only be here a few days. I had three nights off from work. It worked perfectly. HA HA HA. Now as Day 5 comes to a close ( and still no more seizures) I've had to rearrange my work schedule almost entirely. My husbands trip this coming weekend had to be canceled. There is a good chance Arthur will be here through the weekend. Which means grandma will have to come stay will my little one at home, Daddy will come stay at the hospital with Arthur and me? I have to go to work. UGH!!!! I'm suppose to go and take care of other people's babies while mine is still in the hospital????? Mix spring break with sick kids and this mama has no PTO left. So I pray he gets discharged by Thursday and that doesn't happen.................. But we did finally get a private room!!! Yay!!!! So much better

As I sit staring at the "moving waves"

He had his last dose of Keppra 50.5 hours ago. From all I've read, it clears the system in 1-2days. So I sit with my little time bomb. My little " jack in the box." Anxiously waiting, trapped in our little hospital box, for jack. I want this to be over, I want to get the answers we need so we can get control of this monster. But I'm doing everything to go against what we work so hard everyday to achieve. It feels so wrong. The strict schedule, the bedtimes, the meds for Pete's sake.....GONE. I asked for a monitor to be hooked on him at night, seems scary to rip all his meds away and he is not on any kind of heart rate monitor. Praying for sleep

Mother's Day- in the hospital

Well no seizures = no going home. BOO. So we sit and wait. Having a child with epilepsy is like living with a ticking time bomb. The fear, the uncertainty of when the next "bomb" will go off. It's a rough way to live. Sadly a way of life we become accustom to. You never get used to it, you just learn how to deal with a little better as time goes on. ....... So I sit here waiting for the next "bomb." At least Monday brings back the neurologist and not the countless internists, neuro fellows, residents etc that are "covering" for the weekend. Granted all those people will still be around but the people that know what the heck is going on can maybe give us some answers. 

I asked one of them yesterday about the PET scan and it was like dear in the head lights......granted as a nurse that works with residents and fellows, watching them squirm a little is kinda funny.............

 Like yesterday, one of the pediatric residents was telling me how my sons heart sounds great, no murmur..etc. ( my son who had open heart surgery, my son with the murmur you can feel by touch)

 I looked at her with a little smile and said, 

" are you sure ? he had transposition." Then comes the...uh uh uh.

 Yeah maybe it's kinda mean, but I was nicely passive aggressive. Ha ha. .............

 Mothers Day was nice tho. The staff didn't bug us at 7am, meaning we slept till almost 9!! Can I get whoop whoop! My hubby and daughter came and brought me a couple gifts and spent the day with us. The Child Life staff had a little brunch and my daughter and I went upstairs and played. Then her and I walked to the nearby shopping area for some fresh air. I'm not normally a Coffee Bean gal but the coffee I got today was fabulous! It's the little things you know? Like also getting to snuggle with my hubby :) Its amazing how well you fit on a little fold out bed when you barely get to see each other. I love him more then words can express.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ *I apologize for the format of these past few posts. For some reason in the hospital via an IPad, I get no control on format and I can't add pictures. * HOPE EVERYONE HAD A WONDERFUL MOTHERS DAY