And we're back

10/11/13 10:30am

No, not back to normal, (I wish) actually back in the hospital. But there wasn't an emergency or anything it was just time to speed up, and really dig into this healing/seizure-control process and the hospital is the best place for that. We got here around 5:00pm last night. She had 6 seizures in the first hour she was here, then they loaded her with phosphenytoin and the seizures decreased to 3 in 3 hours. They are really taking good care of the both of us-my goodness is this place SO MUCH BETTER than UMC. Haha **((except I do have to admit now that UMC probably didn't have to be as bad as I made it-my attitude totally was not in the right place while I was there-I had so many extra stressors that trip that have never been present with any others-I was trying to get home to nj-I wasn't informed as to what was going on with Abigail, everyday they kept saying I might leave the next day-the nurses just didn't seem as nice and as caring-but, like I said, most of all my attitude towards it was way off-but oh, well, it still sucked-haha))

What's kind of really lucky is that Abigail's primary care pediatrician is the doctor on call this weekend anyway so he's going to be here all weekend with us! We will be here at least until Monday. 

So far since we've been here (about 17hours as I'm writing this part) they've introduced her to a new (short term) med that she's responded to, scheduled an EEG, put in an iv and took some blood-they've already had to poke her 4-5 times and that won't be the end (but Umc poked her every morning while we were there plus several others so we are doing okay. 

After the original loading dose of this new med (I don't remember the name-it's not something we will be going home with so it's not something I've internalized to remember yet) the seizures decreased significantly. When we brought her in (around 5:00pm last night) she had 6 seizures in the first hour, then after the loading dose she had 3 in 5 hours..much better..and they changed again in severity-they were almost too hard to tell if they were seizures or just stretching! But her lip does what I call "her Elvis lip" which usually happens during a seizure so that's what we went with.

This morning, though, her seizure count increased again and they are getting closer to how they were before, still not as bad, but we are thinking she's just metabolizing the medicine really quickly so we just will need to increase the maintenance doses. 

She's been sleeping all day-which isn't very different from the past few days-but she seems just a bit more comfortable overall. After the loading dose she seemed to show signs of being more alert again so that made me feel good to see. I've always thought she'd bounce right back after the seizures go back under control and that gave me a good hopeful glimpse of it. She was looking around more then than at any time in the recent past! 

10-11-13 5:00pm

I have never been so happy to see blood in my life! This baby is making it so much harder on her than she needs to! I know it's not on purpose but they've had to take blood a few times and the first few sticks she didn't even wince then as they had to take more the pokes got harder and harder for the nurses to get and she got madder and madder (understandably so!) anyway-the IV they placed on her fell out and they needed to place another one (she has just gone through 2 blood draws at 3 pokes each) so no one wanted to poke her again but we had to. They tried several times-several places to no avail. Once they got it in and blood starred flowing but then abi kicked really hard (every single nurse and doctor that deals with her is always so shocked/impressed with how strong she is) and the IV moved and so it "blew" (not the vein, the poke) and the fluid "infiltrated" the tissue instead of the vein. We were SO CLOSE! So we called in NICU to have them come try-same story, she got it (after one failed attempt) but abi kicked and pulled the needle back out. We gave her a break until we couldn't anymore and called in the big dogs-we called in anesthesia-even he had a first failed attempt-but his second attempt was a success. He used a deeper vein in her ankle-the sephorous vein-it is bigger so therefore better. FINALLY we got this stupid IV placed. Poor thing

**((All these pokes is what made me realize my attitude towards UMC was a big part of the problem because as much as I HATED that they had to keep poking her here to get that IV in, I was much more understanding with these nurses and doctors than theirs-whoops))

10-12-13 1:45am

This is coming at you real time! Live from the hospital (not live as you're reading it, but as I'm writing it) The life flight team just arrived (after hours of waiting)-we are moving Abigail to Primary Children's Hospital in Salt Lake because they have more and better resources for Abigail's worsening condition. We kind of believe she is in a state of "epilepticus" where she's in a state of just constant seizure. (We don't have her on an EEG so it's just conjecture based on what we are seeing and how continuous and close the seizures are.) THIS JUST IN! NO WAY! THE IV THE DR PLACED EARLIER (that is supposed to be super stable) IS LEAKING!! After all that fight and poke earlier the life flight nurse had to put in another IV!!! You've gotta be kidding! It only took two pokes for Ryan the pediatric life flight nurse. Well, it's Time to go! Gotta put this down for now..I sure wish I could put into words the amount of adrenaline I'm feeling right now and the amount of what's going on!

10-12-13 3:00am

We are on the plane now-just took off. I have such mixed feelings! I LOVE airplanes and flying so I am enjoying the flight itself, but Abi is just so out of it, I want to be holding her. Where they have me sitting in the plane is behind her and the way the stretcher is angled I can't even see her :/. She's pretty sedated so I know she is fine, but I just feel so helpless. Poor girl. I've decided though that I can totally see myself as a life flight nurse one day-totally right up my ally...  The flight should only be about an hour, we are on a fixed wing airplane-not a helicopter. This is the first time I've ever had to experience something like this-thanks Abi! 

I feel very comfortable in airplanes-it was especially fun for me to look in the cockpit and see all the numbers and know exactly what they all mean! Right now we are flying north at a level heading of 358, altitude 25,000-altimeter 30.04. Tail number November 4-8 Igloo Hotel Charlie. I bet we are flying a vector route but since I'm not looking at a map I couldn't tell you the name of it. I don't see any waypoints up on his gps, and it's night, so he is most definitely flying IFR (which would constitute a vector route). This is fun! Why does it gotta cost so dang much!  

"Salt lake control this is Beechcraft igloo hotel Charlie- we are flying northbound at a level heading of 358, altitude 25,000-altimeter 30.04." 

I can hear just slightly the pilot's condition report-information echo-0835z-that's all I could understand-I think I heard the altimeter setting as 30.00, but it is very hard to tell over the noise (I do not have headphones on) 

10-12-13 3:31am 

I just wanna hold her. Love her, give her a big smooching smooch and a never ending hug! This girl is so tough I don't understand. She takes everything she has to go through in such stride! Abigail-warrior-no, idr what it means but I remember it was something cool-not warrior though-but it should be. 

10-12-13 4:05am 

We've landed at salt lake international-BRRRR ITS COLD! Now I just ride in the cab of the ambulance. The driver is a mountain biker that knows spencer (my brother mikes friend) who's big into mountain biking. The gate won't open-the driver thinks the front gate guy fell asleep. Haha

10-12-13 4:39am

This whole night is a big blur-we are now at PCH in RM2304 in the ICU-there doesn't seem to be much going on right now because all of the nurses followed us in-pretty funny. 

10-12-13 4:46am

The dr just gave me a run down of what may happen and I don't love the sounds of it-we may need to dose her so much to essentially put her in a comatose state for a few days..how scary does that sound?? She may need to intubated for breathing if she goes down too far. Goodness. I feel kind of guilty that I didn't think to bring her into the hospital sooner-but I'm also SO GLAD that I followed my instinct to call my mom to come out here and take Abi into the hospital when I did..Coming to the hospital is such a tough call for me because how invasive they are with her and how much she obviously hates it and it's not always (or ever) a quick cure-my sister said it well "well when hospital visits havent cured her....its hard to rush into them i get it!" They seem to make it worse before they make it better-which I guess is how everything goes, and since Abi is looking pretty bad, I can only hope that means it's gonna get better soon! Dr Larsen believes also there is something out there that will work for her and not give her nasty side effects, we just have to find it. There may be one more level of worse before we get better but at least I know that's kinda how it works so I can always be looking for the light at the end! 

10-12-13 9:30am

Potassium channelopothy-a new term I like that describes what Abigail has

"Status epilepticus" - seizure that never stops-she isn't in a state of status epilepticus. 

Vs.

"Epileptic encephalopathy" -hyperactivity almost seizing all the time (smoldering fire) - still exhausting to the brain, still not allowing her to be herself. ((It is a state being that she is in now-not a constant condition)) a light totally just came on! I get it now! The first thought that crossed my mind with that information was "There's hope for Perrin! If we can just break through with him! I sure hope their surgery does what we all want it to! Now I just worry she's going to end up stuck in this state permanently-ugh my emotions are racing now! Now that I understand it better I get exactly what's going on..and that scares me more, I don't want her to get stuck in this state! Once she's out if epileptic encephalopathy things will get better. 

The doc just told me something interesting though, her left side is the culprit side and it's just affecting her right side-which isn't perfect, but not starting anything. I asked if It's like a big brother picking on a little brother and the little brother reacting..he said "kinda"-so close enough! 

10-12-13 10:00am

UA-urine analysis and Urine couture via one time catheter draw-first time for that-just to check for a possible UTI-something treatable that could help, so why not? It won't hurt for sure. 

**((Warning, this next section I was very emotional and very tired and freaking myself out-I had a mini panic attack and broke down a little bit--I put this in here reluctantly as it slightly embarrassing fb to me, but it is part of my experience and would like to have it for my records-but now I'm much better and back to my normal self))* 

10-12-13 3:45pm

I just got the scariest answer of this whole 9 months--I asked (and I'm wishing I hadn't) if Abi could get stuck in this state permanently and the doctor said yes. That when kids this young go into this state this early they sometimes don't come out of it. Doesn't mean she won't come out of it-but I hate that answer. I'm really wishing I didn't ask that question. I'm so scared for that to be the case! And I can't help but blame myself for taking her off that dang topamax that was working so dang well-she was progressing so far and so well-and also waiting so long to get her on another medicine/realize the seizure count was getting too high. I can't help but feel this is all my fault-that I could have prevented it from being this bad. The dr assured me that if a kids gonna go into this state then their gonna go into this state-but she wasn't anywhere close into going into this state until we took her off. I literally watched her deteriorate mentally in front of my eyes and didn't respond to it like I probably should have! As soon as the seizures got to 10 a day--especially 20-- I should have become more aggressive then. I feel like I waited until she was already in this state before I got the impression to take her in. I'm so so scared. I don't want this for her. Danget!!! Why did I gotta change what was working?? (It wasn't really working because it gave her RTA which was affecting so many other things) but now nothing is working! We've tried several to no avail! They slow the seizures down but aren't breaking the state of encephalopathy. Even her EEGS were looking better in August! Danget danget danget. I really made the wrong call here. 

10-12-13 4:30pm

Jeff an Jenna Corry showed up to give Abigail a blessing. It couldn't have come at a better time or been a more perfect blessing. I cannot thank them enough for taking time out of their day to come visit and do that for me. Jenna told me a little story of her daughter Allie at the conference center just before they came here that Allie wanted to make a wish on the waterfall and she wished so hard and at first the penny didn't go in so she ran to get it and wished so hard again and threw it in. She then told Jenna "I just really wanted to wish that little Abi will be okay" cutest story ever made me want to cry-I'm pretty sure I did a little bit. Jeff then gave Abigail a blessing that gave me such peace and such hope. He said essentially her brain will become clear and she will be healed. That she will "come forth and do the work she was brought here to do" and "she will be a good example for her parents" that she essentially will pull through this..I wish I remembered more that he said specifically, but the overall message was what I needed/wanted. That blessing honestly couldn't have come at a better time. He says that's what was just flowing through him and he feels that's what The Lord has in store for her..that he wasn't being biased, or saying what he wanted, but truly what he was inspired to say, and that's truly how he felt. I needed that more than anything at that moment. Immediately a "weight" was lifted from my chest and I was able to get right back to not worrying and being positive. 

10-12-13 7:42pm

My mom is almost here! Last night I had to follow the ambulance and drive my car to the St George airport for my mom so she could drive it to me in salt lake when she lands! Isn't she a saint? 

Not much has changed with Abigail except we haven't seen any seizures in a while-I still think she's in the state of encephalopathy but she hasn't had to be intubated yet. She is still breathing on her own with full oxygen saturation (just to clarify, there was never a time she was not breathing on her own) it's just something that keeps us all positive. Yesterday she was still taking a bottle-today they had to put in a feeding tube in her because she is just so worn out from all the sedative anti-convulsants..I'm hoping that's why she is the way she is right now over it being caused by the encephalopathy. I actually took a nap earlier today and woke up to them putting the feeding tube down her-I got a little nervous that they were incubating her because she was breathing so raspy that I thought "well, crap" but then saw the thin feeding tube line and liked that thought much better. They have a continuous video EEG running, which is good, but I just wish I could understand what it was saying!! Those crazy neuros and their gibberish EEG readings. Some other things they have done is loaded her with keppra, phosphenytoin, and phenobarbital-all sedatives. They are going to give her a steroid burst-but not the ACTH treatment, it is a more general treatment, the same steroids used for asthma and all that. They took some blood (from her heel-which is okay for this test) to test oxygen levels just to be sure the reading on the screen is accurate and where thy haven't come in and started oxygen I'm assuming what they found wasn't too scary. 

I think that's about all I got for you guys right now-I know this one is a doozy and has ALOT of information and crazy things happen-but it puts a good perspective on how my days feel-one long day from Thursday evening until now. 

Well, just kidding. Here are some things I jotted down randomly throughout the day as I thought about them to add in here somewhere, now seems like a good time as ever: 

-abnormal (AbiNormal) seizures-looking around/crying etc (funny/typical). Typically seizures are not associated with any types of crying or looking around and Abi's have been-so that's abnormal for an already abnormal behavior. That's kinda funny. 

-Dilantin is not working, and we have come off trileptal completely 

-large dose of ativan-knocked her out but she's still seizing..but the seizures are a little slower 

-I think I don't quite comprehend the seriousness of her disorder, but I think that's okay-it helps keep me calm, collected, and positive..I don't want anything to change in that regard (which is ironic that I had this feeling jotted down before I learned more and had the light bulb about her condition and then the scare of it's seriousness-I totally lost my calm at that point-just weird-now I've got it back and still understand everything) maybe that's why I typically play things down so often

-it's crazy how different she is now than just a month ago-so tired and lethargic, so out of it, and so uncomfortable now. 

-please, no more poking, no more prodding, no more messing with her. Just fix it. Ugh-I know they can't fix it without poking and prodding and messing with her. I joke and say that in my world I would change a few things about the body-1. The uterus will be placed below the bladder, not on top of it, 2. Skin will be clear so you never have to guess where a vein is to poke, and 3. There will be a better way to draw blood that's not so painful-maybe you just push your belly button and some will dispense out your nose-wow-would that suck or what?! Haha In all reality though, there is no better way to have created the body than it is-the man upstairs really knows what he is doing! Sometimes we gotta deal with needle pokes and prodding to get results and answers and that can be tough for everyone involved-but it's necessary and the only (and best) way. 

Now that really is all I have for you-for today. We will be here in the hospital at least a week and a half-there will probably be a lot more in the future. Keep coming back!

**(( - text added on 10-12-13 from 8:15pm-8:30pm while editing and clarifying. (I didn't edit everything, just things I wanted to add to/clarify-so I apologize for the typos, my thumbs were running 100 miles per minute and there was a lot going on-just adds to the authenticity of it all, right?)

This isn't our AbiNormal-but we will get her back!