Take A Deep Breath....

We obviously survived the night at the hospital. I stepped outside my comfort zone and did the unthinkable (in my book). I begged Lonnie to do it but he refused. It was either me stepping outside my box, or suffering with Tweedle Dee and Tweedle Dum all night.

Regardless, we had to anyways....5 hours into the 24 hr. EEG I was going nuts with the room mates. Frustrated, is putting it mildly.

Daniel wasn't happy, Lonnie wasn't happy...I WAS NOT HAPPY. I don't think I've seen 3 people eat potato chips with such gusto as they were. It was obvious that no one ever taught them to chew with the mouth closed. I need to tell you these were not children. The guy getting the EEG was 16-18 yrs old. The older brother was in his early 20's and then the mom who couldn't control either of them.

So I came up with this thought....we already knew our course of action if there were seizures on this EEG. We would be starting the ACTH. So it was 4:15 p.m. and I ran to the neurology department and found the head nurse for Dr. C. Explained that no one was happy, could someone possibly go upstairs and look at what they had so far for Daniel's EEG. If there were seizures, unhook him and send us home there was no use in suffering for another 19 hours.
To my amazement, she didn't laugh in my face (see Lonnie I told you!). She said, let me see what I can do.

Less than 30 minutes later in walks a group of neurologist. I have to tell you at that point I was regretting asking because I was afraid they were going to tell me he did indeed have a seizure and send us home. Double edged sword...I wanted to go home, but I didn't want to find out Daniel was still having seizures. So for a brief minute or so, I wanted to tell them to back up out of the room, I wasn't ready to hear the bad news.

Good News/Bad News: Good News was that in the 5 hrs that Daniel had been hooked up, there were no seizures. Bad News, we had to stay the rest of the night with the room mates. But it made it a little more easier knowing he hadn't had any seizures yet.

So today I waited for the phone call/email from the hospital. They know we are anxiously awaiting the results. All of a sudden an email comes in with the Subject: Daniel EEG and I froze...I didn't want to read it....I was scared. Just stared at it for a couple minutes

Lines in Blue are from the nurse - Lines in Red are my thoughts

Ok – deep breath – (THIS IS WHERE I STARTED BRACING MYSELF FOR THE WORST NEWS)

no spasms!!! (YEA!!! Do the celebratory dance of joy) So - the vigabatrin is working.

There was a lot of interictal(between seizure) activity still – but that’s OK, as long as there aren’t any spasms. (Ok Stop Dancing now I'm confused....interictal activity (between seizures)...WHAT SEIZURES? I thought you just said no spasms. Does that mean he is having another kind of seizure? Care to explain to me in real simple terms what interictal activity is?

And – you are not pushy – just concerned, and I’m glad when I can relieve that even a little bit

(She said that because I apologized for being pushy and having someone come up to check something special for us.) I actually found out that she went and grabbed one of the doctors coming out of surgery and asked him to come check Daniel's EEG, he said fine but only have a few minutes before going back into another surgery. Pretty cool eh? Now I don't expect this to happen all the time, but the worse that could have happened when I asked was she could have said no. No actually she could have laughed at me....that would have been worse cause Lonnie wouldn't ever let me live it down!! But because I did do it, and got someone to look........I now rock, and I throw it in his face!! LOL

She definitely rocks in my book! She is one helpful person, she listens when you cry, she tells you things straight out and she is caring about my child. I appreciate that she is on our side. Now I just need to figure out what the one line means and we are good to go.

Wordless Wednesday

Hospital Deja Vu

We are in the hospital again for Daniel's VMR (Video EEG). Odd, but it seems like we've been here before? Not sure why?

Could it be....oh, we were just here last month? Seems vaguely familiar. Deja vu. Could it be because over the last 3 1/2 yrs, we've been here umpteen times? Can you tell how much I despise being here? Oh really I love it.... Can you hear the sarcasm through the computer?

This time seems to be extra special. Why you ask? Well I'll tell you. WE DON'T HAVE A ROOM BY OURSELVES!! This is the first time we are sharing a room. For those people who are in the hospital more frequently than others, lets review;

"Semi-Private Room Etiquette"

• You and your guests are NOT the only ones in the room, therefore it is inappropriate to have the volume on your television set to DEAFENING!
• Do NOT crank the heat up to sweltering on the thermostat. Your mouth flapping continuously will create enough energy to heat the room.
• It is NOT recommended that you have a mini family feud with your older brother about who got to play more of the frickin' handheld video game.
• While sharing a room, it is NOT kind to burp, belch, pass gas and then say "oooh that was a good one".
• That we use INSIDE voices (as in whispering) when other room mate is SLEEPING. Outside voices are meant for "outside"
• It is not appropriate to the you brother (who is the patient) that if he doesn't straighten up you're going to "beat the crap" out of him when you get home.
• It is inappropriate to use the "R" word every hour at least five times.
• When you get up to use the restroom...TRY to attempt to be quiet with the big block of wood hanging by the hinges...its called a door and when swung with force, it will slam.
• When the nurse comes it during the night, this is NOT a good time to share the knee-slapper of a story you have and laugh about it for the next 10 minutes.
• Nor do the next five people who walk by the door want to hear it either.
• DO NOT keep adjusting your bed every three seconds.....JUST PICK ...sitting up or laying down. WTF?!

We've only been here for 12 hours, I am sure to add to the above list before the night is over. I can feel it. And no I'm not being sarcastic. I always joke about which of us (Lonnie or myself) are going to make it home alive because we get so cranky with staying up for 24 hours, the stress of trying to keep Daniel happy while sitting in a bed for the same amount of time. This time I promised myself I would try extra hard not to snap at Lonnie for stuff. Then we get put in this room. This SHARED room. I can barely handle the noises of the person I love, and the hospital puts me in a very small room with three other people that I now have to contend with. Someone is punishing me, I know it.

If you look up the word Misanthrope you will see my picture, I can't stand people. Could be stress, or hormones, nerves, or that I'm getting a zit on my chin and we have a photo session on Saturday. Nope, perhaps... I think its just more of me being a B*tch. I want to be home with my son in out own space, in our own beds without Tweedle Dee and Tweedle Dum!

Waiting...SUCKS!

Well both Lonnie and I survived the EEG. BARELY!! It sucks not being able to sleep during the EEG.

I haven't been in the greatest frame of mind this past week. I can't stand waiting for results of tests. Why can't they just have someone on hand that can read the results right away? I think they get pleasure from torturing us during the wait. I just have a weird bad vibe about this EEG. We pushed the button on all the weird movements that we think might be seizures. I am crossing my fingers and hoping with everything in me that they aren't seizures, that they are just little Daniel quirky movements. I know....THINK POSITIVE!!

On the other hand I've been real busy this week with a large order of the felt crowns that I am making. (See side bar for felt crowns). I had posted a photo of Daniel wearing his crown and got a few people asking about them. Word of mouth, and I got a few orders, 20 plus crowns in a week!~! We were sewing freaks at the house, as they are all done by hand. LOL God forbid anyone stopped by my house cause its a complete disaster with fabric and felt all over the place!

But its a good amount towards Daniel's ABR therapy. So if you know anyone who is having a party and needs party hats, or just for dress up!! Or if you'd like to order one and have it sent to someone for their birthday. Wouldn't that be fun to get!

So, it kept my mind off waiting for the results from the EEG with sewing and taking care of my sister who had her hip replaced last week. Can you believe they have you up and walking around in 24 hrs after your surgery? YEA they do!!!

There are some photos of our EEG experience. They don't differ much from the last 800 times we've had it done. He still cries and gets all heated up. This time the technician took FOREVER to get him hooked up. Then after she wrapped his head all up, she found that she missed putting one of the electrodes on and says "oh we'll just put this one right here behind the ear" and she glued then TAPED it on his hair. I always thought that they had to go in specific places and just just stuck where ever you want!

OMG!

Well currently I am sitting across from Daniel who is laying in the hospital bed getting his VMR. (24hr. Video EEG). NOT FUN.

If you want a good laugh (to a not funny situation) find our other posts of our experiences with EEG's. Its a good chuckle to see if Lonnie, or if I will survive without killing each other. See adults can't sleep during this time. One of us has to stay awake to make sure if Daniel makes any weird movements that we hit the button to mark the video recording.

We're not sure if Daniel is having seizures or not, but this is the time that I am going to mash that button at any strange thing that I've seen him do. Anything that might even be questionable. This way I will know for sure in the end.

He is happy now as it lays in the bed with his orange pillow, his sock monkey pj's and his Elmo blanket watching Go Diego Go. This was NOT the case when we got hooked up to all the wires today. The whole time he was getting hooked up (which took FOREVER!) Lonnie kept mouthing to me as I was holding Daniel on my lap, "WE ARE NEVER DOING THIS AGAIN!"
It is traumatic for Daniel (and us). It sucks to see him scared and screaming, with tears running down his cheeks cause he is not understanding why this person is doing this to him.

I think unless Daniel actually has a big seizure, or a notable one at least that this will be the last EEG we get for a LONG time.