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Dreams Coming True....

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Sunday, June 1, 2008 1:57 AM CDT

BEEEP BEEEP BEEEP... yeah thats to block out the string of curse words that are coming to mind :)
Let me just say its been ROUGH to say the least. We are just now FINALLY coming home after leaving MONDAY for a simple ENT appointment in DE. Ha... Simple trip right? Its only 2 1/2 hrs away! MY BUTT!

So we went to DE, stayed at the RMDH Monday night because Arianna had an appointment early in the morning w/ her ENT. She was going to have a simple T and A done *tonsils and adnoids removed*... I shouldve known then that things were going to go down hill quick! Arianna had a few seizures sunday night after being outside in the sun all day. No biggy. Had a few monday, again no biggy. Went for the ENT appointment and we were told that she would not be having her tonsils out because that would open her up even farther to more infections and we would almost be guarenteed to have another heart surgery with in months because her heart wouldnt be able to fight it off. CRAPOLA. So, now when she gets strep, we're supposed to have the ped notify ENT and they will tell them what to do, MASSIVE antibiotics AGAIN, or they will notify infectious control in our local hospital to have her treated OR...HAHAAHA big kicker, have her transported to DE so THEY can treat her. All this because she keeps getting strep! YUCK!


So driving home tues in the middle of 95 (for those that dont know what that is, its a MAJOR interstate in MD/DE that has the worst rush hour traffic!) welp, Lauren started screaming ANNA's DYING, ANNA's DYING! We look back and Arianna's blue and seizing. The last time I looked back at her I THOUGHT she was sleeping, now find out she was in a deep brain seizure. So we pull the car over and give her Diastat to stop the seizure, just opening the door for fear one of us was going to get hit stunk, but bending her over in the car to give it was even worse! So we got back n the car and watched for a few min. It had stopped. 6 min later it came back worse then the original seizure. Went to go get more Diastat and #$#(*&# we DIDNT HAVE ANY!!!!!! Thats when we started panicing. Matt called 911 and I called her doctors in OH. Good thing for 2 phones. 911 assured us they were going to be right there. A few min later we saw the helicopter above us. They were trying to land but there were too many cars, so they had to have an ambulance come in thru the traffic. They took us to Siani Hospital in Baltimore. Arianna seizures clustered for about 5 hrs. Thankfully it was managed and under control, if you ever want to call seizing that long under control! Then what worried them was she wasnt waking up, they didnt know if there was alot of brain damage, or if it just wore her out from all the meds etc.. So they talked to her doctors in OH and they said they didnt care where we admitted her, but they wanted her somewhere NOW that would be able to treat her. We were given the choice of having her lifelined back to DE, to John Hopkins or Children's National in DC. Since they saved her life once before, thats where she was transported. I can I was truely impressed with how they changed the neuro floor since Arianna was there. WOW, it was amazing! Kids had PRIVATE rooms, big flat screen TV's w/ internet, movies and games on the walls and even a big couch and chair for the parents to sleep on. Ok, dont let me build that up too much, if anyone's ever stayed in the hospital w/ their kid they know those fold out things arent the greatest of comfort, but amazingly enough, when you've hit that point of exhaustion it really didnt phase us. They tested for lots of stuff, still couldnt figure out what was going on. Played w/ her Depekote levels because they said by their standards theyw ere too high, but by her neuros in OH they were fine. They did 2 EEG's. The first for 45 min and then the other for 24 hrs. Arianna still keeps loosing memory from the previous day and above all would be awake for 50 min at max and then sleep for 3 hrs. We were thinking OH NO, NOT CHF again! But thankfully they ruled that out to! So who knows. But she had to go 24 hrs w/ out one little seizure. Normally that wouldnt be a problem. But the old rule holds true, if you dont want a kid to seize, hook them up to an EEG! She seized from the time they started working on the leads, until right when they hooked her up to the system and then a big ol NOTHING... Everyone was like WTH??? I guess it will be some kind of funny down the road, but right now.. It just ticks us off! You know the feeling when your finally going to get answers, only to get smacked in the head by nodda.. Yeah that kind of sucks!
So yesterday they added another seizure med, and a few days ago they upped her Depekote, did the levels 3 more times and said we werent coming home till sunday.. This morning they said they captured one seizure and alot of ticks and muscle spasms.. No real answers but they said we could go home. Umm great, in the middle of some wild thunderstorms WITH OUT DIASTAT.. HUH? The hospital didnt have any, the only place that did was the clinic which was closed, and they had called several pharmacies who either didnt have it or didnt take her insurance which wouldve made it VERY expensive to pick up.

So in fear of another seizure we made a car ride that normally is about an hr and a half into almost a 3 hr trip just to be on the safe side, stopping alot, sitting beside her, having our early warning system *LAUREN* tell us if she saw sissy doing anything strange. She's pretty good at that at the ripe ol age of 2 :) We didnt hear "Anna's Dying", nope we heard LAUREN STOP IT, IM OK all the way home LOL. Lauren kept poking her, biting her finger that she could reach from her car seat anytime she saw Arianna start to dose off :) Poor thing was really tired, but little sis was determined not to let her nod off on her. She even wacked her in the head w/ one of Arianna's balloons she got in the hospital. That part I think was just in spite, but Ill let her go for now.

So, in a nutshell, we are the energizer bunnies, try to knock us down and we will keep going and going and going.... Dont know when this rollercoaster will let us exit the ride, but Im sure ready for it right now!

Oh yeah I forgot my funny... You all who are small towners will love it. I left the hospital for a bit, when going back into DC I got somehow turned around and welp LOST. I even called the Tuberous Sclerosis Alliance since I was in their neck of the woods for directions. I really wanted to visit some of the people that Ive talked to over the years over the phone, but I got lost for almost 2 hrs IN DC! I would call the hospital and talk to the nurse's and they'd get me going the right way only to miss a street and yep, get lost again. I finally found a police station in the middle of no where (did you know they have yachts and large amounts of water in DC? Yeah, well me either till I found hte PD :O ) I walked in and 2 officers looked at me (little on the frazzled side by then) and I said I need some help. My daughter is in one of these hospitals around DC and I CANT FIND IT! There was a nice woman officer who googled directions after she stared at me and asked How did you get HERE? We're pretty far away from where you want to be.. Ha ha, just point me in the direction Im supposed to go. Well, she even printed it out for me and yep, you guessed it I GOT LOST AGAIN! I kept finding all the cool musesums and even the captial building over and over again, but couldnt find the darn hospital. Finally I stopped my car *bad place to stop, mental note to self, if Im going to get lost in a big city, get lost in the SAFE areas!* and had a few eye openers. Needless to say I FINALLY made it back to the hospital safe and sound and refused to leave again until Arianna was discharged :)

Bridget

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