Last Day - Final Blog...for now ;) (some more pics too)

Mom and dad were early to pick me up. Had to wait around for a while to be discharged. I was sad to say goodbye to the nurses, care partners, and staff. Like I mentioned before, everybody was stopping by to say goodbye so that made me feel a little better. It feels like I was in the hospital forever, but not in a negative way. I felt comfortable and I was very well taken care of. I made friends with all of the nurses and staff. I was in good company and I had all of you guys supporting me and sending me your kind thoughts and good energy. I don't know how things are going to turn out, but i'm hoping for the best. Again, thanks for all of your support and love, love, love. :D

Here are some pics of me:

The beanie was there to secure the electrodes on my head to ensure they wouldn't move around with all the activity. Sweet getup right?

This was taken during one of the first few days at the hospital.

This is before I started getting sick and I was still able to wear my own clothes. (note: if you look @ the board to the left there's a note that one of my care partners left for me "get a seizure") LOL

Needless to say, this is after I was really really sick (look at the bags under my eyes)

and look at how high up the rails are (to ensure I wouldn't fall over when seizing).

Last Day part 2

These are SOME of the electrodes I had placed on my head

Kirk the hilarious chief Neurology Tech that re-gel'd and removed my electrodes

Before I left, Kirk, the chief technologist stopped by to remove the electrodes stuck to my head. He removed them with acetone(!!) so he gave me an "acetone removal breathing apparatus" aka a big piece of paper to fan myself with. Dude's so funny!!!

Kirk stopped by once a day to re-gel my electrodes (which relieved the itching) and to make sure they were correctly in place. Kirk always made the process go by quickly with his dry sense of humor. The day before yesterday he offered to give me a copy of my personal recordings. I didn't really know exactly what was in the recordings so I was like, "okay". He brought it by today since he was going to remove the electrodes from my head and it would be the last time we would see each other. As we were talking I mentioned that I've only seen somebody have a seizure once and that it was traumatizing. When he heard that he said, "oh you should take caution with that DVD, I gave you. It's footage of all of your seizures big and small!! There's also recordings of the EEG and copies of the PET scan, etc etc." Bascially he hooked me up with a free DVD of information I'd need for a second opinion. That info is really hard to get. You have to request it months in advance and you have to have several approvals and several signatures from different people in different departments aside from the paperwork that would need to be filled out by the other doctor. At first I was very curious and had every intention to look through the CD. But now, there's no way I'm going to view the footage of myself seizing. I am happy that I have it, though, because I might want a second opinion after the doctors at UCLA give me their prognosis. *sigh*

Last Day (possibly last post...)

Apparently I'm Freakin' awesome! The nurses have been stopping by because they heard that today I am going to be discharged. All of them have been coming in to say goodbye, and to wish me well. Many of them have woken me up but it's nice to see them. The sad part is that I barely remember some of them :(. All the seizure activity has messed up my memory. I hate this feeling. I remember a lot of their voices but their faces not so much.... :( This is one of my biggest worries about having the surgery. The surgery causes memory loss. And, of course, there's no guarantee that surgery will stop my seizures. It might...but it might not. If it does stop my seizures, my quality of life might improve...but will it really? Without my memory and without being able to remember generic words such as names of colors, or worse, without being able to remember people in my life...will that be a better life for me? Memory loss sucks so much and to be honest, it really hurts not to be able to remember all of the smiling faces coming by to wish me luck. :(

I have mixed feelings about leaving today. Yesterday I was feeling melancholy, and vulnerable but today I'm anxious and nervous. Anxious and nervous about what the future holds for me. I hope nothing but good things/results come from my stay here. Hard to believe that it's already been a week huh? I think I mentioned this in my last post, but I am SO GLAD I started this blog. I've been able to refer back to my old posts to help me remember bits and pieces of my life here the past week. Discharge is at 11am. Again, I'm anxious but I'm trying to stay positive. I'll be staying at my parents for a while in case any of you want to stop by ;). Thank you, every single last one of you for your support, prayers, well wishes, cheerful visits, phone calls, emails, facebook messages, everything. You guys all cheered me up when i was scared, nervous, anxious, lonely, sad, and even helped me to stay happy when i had my flashes of cheerfulness. I can never thank you enough, but just know that my heart is bursting with love for every single one of you. :D

Julio - the most talkative of the bunch also a big flirt...slow down there, cowboy!

Maria- super cute and sweet care partner

Florence - nighttime RN funny and was never afraid to wake me up :-|

Nighttime board

Ben, my nighttime care partner. He was a big clown..alwasy made me laugh

(btw, look at my awesome blood pressure ;P)

Maria - one of my day time care partners and maybe my favorite nurse!

Day 7 Part 3

It's 10:35. I've started to gather my things. I'm leaving tomorrow. I'm both anxious and nervous and also sad to leave. Sad to leave because of what I mentioned in my other blog. Mostly I'm scared. I'm afraid to be alone. Here, at the hospital, I've had 24 hour watch and care. There's a camera monitoring me. If the nurses see me moving around too much, they page me to make sure I'm okay. Not only that, but I have a personal nurse that checks in on me once every hour to make sure I'm comfortable/okay or to take care of anything i need. All of that made me feel safer. I know I wont have that when I get home so i'm kind of anxious and scared.

On a different and brighter note, Marie and Lupe came to visit me today. They were the highlight of my day!! They brought me smiles and laughter. In situations like these nothing is better than visitors and phone calls from people that love you. They make the entire situation easier to endure. And it makes you realize how many care about you. Love you guys

Day 7 Part 2

As I mentioned in my other blog, my doctor gave me the okay to leave. I, however, was feeling sad and lonely and didn't want to leave my nurses/care takers, so I told him that i was still having auras in hopes that he would let me stay. And sure enough he told me to stay for one more day. WTF right? How could I ask to stay when the entire time I've been here all I've wanted to do is go home. Weird, right?

I called my sister and told her about this. She said it was actually a good idea. My body has been stressed out by the lack of meds and all the seizure activity I've had recently. So it's going to take my body some time to recover. If I should go right now, it wouldn't be the best idea, because i'd probably have many, many seizures at home. I should wait until my auras aren't as frequent (right now I'm having 5-15 minute-long auras a few times an hour). I need at least one day of recovery at the hospital. I'm glad she told me that, because I was feeling like a weirdo.

BTW have I mentioned how much I love the staff here?? I'm really going to miss them so much. I've never had a staff that's so cool and interested in getting to know you. Staff like that makes hospital stays much easier to get through. like I mentioned before, most nurses hardly ever even look you in the eye. Quite different from the nurses here.

UPDATE:

Just spoke to Dr. Haneef and he told me that I'll definitely be ready to go home tomorrow. He told me that I had 14 seizures throughout my entire stay. Dr said they have more than enough information and that he and a group of doctors will be going over the results tomorrow. After that they'll come to a conclusion. I told him about the auras I've been experiencing today and he told me calm down, try to relax and that they have valium nearby just in case i need a sedative. I hope i don't need the valium...i've had it before and I don't like how drugged out it makes me.

Aside from that, I have a few people that are going to stop by today. I love visitors! yay :)

Day7 mid-morning, early afternoon

I finally had a grand-mal seizure last night. I woke up feeling very confused and disoriented this morning. There were a couple of times, last night, that I woke up and was freaking out because I didn't know where I was. Nothing in the room seemed familiar. I didn't know what day it was and the nurses coming in didn't seem familiar to me. I'm glad I have my blog to refer back to.

Speaking of which, I was going through my blogs and realized that what i started writing in today's blog is EXACTLY the same as yesterday's!! LOL.

The difference today, is that I finally had a grand-mal seizure. Last night they pulled me off of all my meds, and that finally caused some activity aka seizures. This morning my doctor came by and told me the seizure was successful, it read wonderfully on the screen, and they have all the information they need. Since they have what they need, the doctor (Dr.Haneef) told me I could leave today. I told him that I was having auras (one that lasted about 45 minutes) and asked if he really thought it would be best for me to go... so he told me to stay one more day. Can you believe I manipulated him into letting me stay one more day?? Especially considering how badly I've wanted to go home. But I really wanted to stay...

Stay for another day because....K, are you ready for this? The weird thing is after doc told me i could leave I started feeling melancholy and had a strong urge to cry. I don't want to leave all the nice people I met here. The nurses were so kind to me and took such good care of me. These nurses took interest in me, and did all they could to make me laugh, smile, and keep me as comfortable as possible. I've never had nurses like this. Usually nurses are in such a hurry to get to the next patient that they barely even look at you. Maybe I'm feeling like this because of the grand-mal I had last night. Grand-mals make you vulnerable and emotional. Maybe it's because while I've been here I haven't had to think about life outside of the hospital and have had people taking care of everything for me...hmmm I realize I'm a big weirdo, considering how badly I wanted to go home yesterday. I realize now that maybe it wasn't such a good idea to ask to stay but, whatever the case, I'm going to talk to my doctor and see what he says. Hopefully I'll be able to take back what I told them earlier. I really should leave.

The thing about my nurses is I've developed good relationships with them and I feel that they truly cared about me. Even though the nurses are paid to care for their patients, my nurses have gone above and beyond for me. They treated me so well and I'm so thankful to them. I'm thankful that I got to see their kind faces when I was ill. I'm thankful that I had their support when I was at my most vulnerable and and grateful that they saw me through my scariest moments here. They made me feel safe and cared for. They cheered me up when I was sad and made me laugh when I really needed it!

Whoa, just spoke to my Student Nurse, Rene, and he told me that I had 8 seizures last night!! 8 seizures and 1 big one. No wonder they have all the info they need! Maybe it's best that I don't leave! I need to be taken care of right now. I want to cry. I think after this I'm going to have to stay at my parents so I don't get too depressed. Thinking back to past episodes, melancholy and sadness are typical after a grand-mal seizure. This is normal for me. I just haven' thad one of these in a REALLY long time.

So now i'm waiting...i would like to take a shower, and start packing my stuff. I hope I'll be able to go home....again, even though i'm going to miss my nurses (murses too) I need to get going and focus on getting my life back on track. I hope I get to spend lots of time with my family and surpress my sadness/melacholy/depression as much as possible.

Tuesday, Day 6, Evening

Woke up strapped down to the bed! I tried my hardest to get up. Immediately one of my nurses paged me and was talking to me via intercom. For some reason I'm really feisty today. She was trying to remind me why I'm here and how long i've been here. I was like 'ef you' that's not true! Afterwards I was arguing with my doctor too. He asked me why i was so confused, I was like, "hello I've just had seizure after seizure, and I haven't had a good night's rest for a while". I felt like he was being mean to me. I called all of my family in hopes that they would be able to fill in the bits and pieces that i was missing re: my stay here. I was so confused and couldn't remember where I was. I called my sister and my dad and I had to ask them what was going on. Luis textd me after and told me to read my blog. Haha, for once I'm happy that I put all my shit out there for everybody to see. After reading my blog I completely remembered why i'm here. Dr. Haneef came back and I told him I remembered everythig and he said "you see, why did you feel the need to fight with me". haha!

Right now I'm feeling lonely, sad and vulnerable. I wish somebody familiar was here. I guess I made friends with the nurses because they've all been stopping by to make sure i'm okay and have also been helping me fill in bits and pieces. One of murses (male nurse) was laughing at me. That made me laugh and also made me feel so much better.

Being here is tough. I don't like that this happens. It's scary not to know where you are, and to completely forget important incidents that happened recently.

Please pray that my stay will be successful and that I get to go home soon.