Back In

Well, I am back in the hospital again...The pain got so bad that my grandmothers finally called. The ALPS test still hasn't returned...sadly. The pain started two days after I got out. The pain started in my ankles, knees, and wrists. That pain started before went into the hospital a couple weeks ago. They kept freezing up and hurting me to the point were I would yelp, and I don't normally make noise when I hurt. Then day by day it got worse, and started to spread. Now it is all through my legs even in my toes! It is spreading in my back, and now my other side of my ribs hurt as well. Plus its now in my fingers and is now spreading in my arms...I can feel it...Every time I go to bed, and wake up it feels like a huge BRONCO ran over me, and I can't even move. All I do is scream...or rather yelp.I don't even have to move and it hurts! The only thing they can do for me right now though is give me IV pain meds...

Home At Last

I am finally home!! I came home in the snow lol. It was so cool!! The best part...I finally met my Brother...I have never seen him in my life till now. He came in and I didn't know who he was. For the first time in my life I was speechless! I started to cry lol. This Dads first time seeing him too. Daniel has been searching for Dad for two years now. This meeting was planned for six months! Dad and I had no clue about it lol. My Aunt found him on the Internet and gave my Grandmother his number. Now he is here lol. They are planning to get tattoos together real soon. He is so much like me in so many ways. I still have to get used to Daniel calling my Daddy, Dad and my Mom, Mom. For so, so many years I have waited for this day to come. That is all i ever wanted ever since my Dad told me about him. He looks so much like my Dad...but...now I'm not the only child anymore. I guess I have to get used to that as well. I'm just glad that I have finally met him...

No News/Home

Well they looked and they said that I don't have Hyper IGG4 So I guess that is good. Now all we are doing is waiting for the ALPS test to come back. I made a bet with one of the doctors, that it was going to come back negative and he said it would come back positive. He bet a dollar...cheep skate...Oh well, his loss...There is not much to say but that I am going home tomorrow morning...I feel like I am being tossed to the side, but no one cares what I feel...I do want to be home, but part of me doesn't want to leave this hospital till I know what is wrong. I am in pain, but now I am on OP pain meds...It starts working in an hour. Thats why I like IV pain meds, but I can't go home if I get IV...I don't know what to do anymore...

Pet Scan

Well, I went and got my pet scan done today. It was horrid...I had to drink some really nasty stuff called barium. I still smell it and I never want to smell or taste anything like it ever, ever again! It made me want to throw up and that is supposed to be the better tasting contrast. The scan itself wasn't so bad. At least they didn't have to sedate me like they had to for the MRI. I was asleep for the most part anyways. Well now I have to work on getting myself off the IV pain meds then they will put me on pill form. One of the doctors here is trying to send me home, and my grandma said "So you are just gonna let this stuff eat up her kidneys?" He was like "Ummm you will have to talk to Dr. Louis about that." lol So he knows when to back off. I really want to find out what is wrong with me. So far they have found no signs of Lymphoma. So, yay no Lymphoma^^ I guess I can cross that off my list...I thought that if it wasn't Lymphoma that I would have to go to Ohio...Well I will talk to Dr. Morris about that when he returns. Dr. Morris is resting at home because he was in the hospital over the weekend. He is a very sweet man and he is single if anyone is interested in him. He is looking for someone that will care for him and that will love him no matter what. You would be one lucky woman if you had a man like him. I just hope he gets better soon...

Surgery

Sorry I didn't get to write anything yesterday, my Grandmother was on the computer all day and all night working. I finally just gave up and went to bed. Well, the surgery hurt really bad. I still can't even bend down to save my life. They punctured my kidney four times and got bone marrow out of both sides of my hips. My back is so swollen from that stupid surgery. Good thing they are upping my pain medication for I guess just for today. I got to see my Mom and my Dad yesterday. Dad could only stay for a few minutes, but then he had to leave for work. It upset me that my Dad couldn't be there for my surgery. This was the first surgery that I have ever flipped out about. For some reason I was scared...Everything turned out ok though. Oh, I didn't get a picc line put in, but they are going to try again soon so yeah. Well tomorrow I have to go for a pet scan. This should be fun...I am claustrophobic so um yeah. They had to sedate me for an MRI the last time I had one. I was in that stupid tube for like two hours and I was only supposed to be in there for 40 minutes. I had a panic attack so they sedated me. Oh my Nanny just called me and I haven't talked to her in like 9 years! She doesn't sound like I remember...Well until tomorrow...

Sick

Sorry I didn't write anything yesterday, I was terribly sick. I still am, but not as bad as I was. I was up all night throwing up. I threw up, no lie about 28 times. I was so dehydrated that my blood pressure was 72 over 42! So they had piggy backed two IV bags at the same time on me just to get me back to normal. Everyone is blaming it on my Dad, poor Dad. Well in other news, I'm going to have surgery tomorrow. Isn't that fun? They are going to try doing the picc line again while I'm under for surgery. Please everyone pray that this time it will be a success. That would mean so much to me. My IV went bad today so they had to take it out, and put another one in. The lady who did the new IV said that I need a picc line and I need one bad. She said that I have no good veins left...I really need this picc. My stomach feels weird, but I just took some medication for it. I took some pain meds for my back, but it still hurts. Maybe if I go to sleep it will feel better...

Sitting Around

Today has been very boring...I hate sitting in a bed all day, although I do enjoy not having the revolving door. I hate all these doctors coming in at different times. When do they expect the parents to go out of the room? So far I think only two doctors have came in today. One of them I had seen once before, but I don't remember her. I don't know why, but I need that picc line. I want them to try again on Monday...If they can...Somehow my mind is telling me that I need this picc line. So I will try, try again. Hopefully my mother will let me...My father is sick and he cant be around me, because I have to take this type of medication that destroys my immune system. I wish my dad could at least come and stay on the other end of the room, but it might be air born and we cant take the risk of me getting sick, because I have surgery on Tuesday. If I am here for more than two weeks, then they will have to send me to Cincinnati, Ohio. My Dad cant go with me either, because he has to stay home and work...or we will, well...loose the house. If I end up going to Ohio, I wont be able to see my Dad before I leave, because he is, well...sick. My Mom and Grandmother is going with me though, that makes me a little happy. I will miss my Daddy...Well I got my pain meds just a few minutes ago. I feel a lot better now. I can't wait till they figure out what this is...

Picc Line

Man, oh man! If I have to get another picc line again...I went down to get a picc line placed at 12: 30. I got into the little room and they sedated me. I woke up (it took A LOT of effort) and I heard someone say to me that I didn't get a picc line in. I thought I was dreaming. I mean come on how hard is it to put in picc line? It was so funny! When I woke up I was NOT in my right state of mind lol. I was moving but I couldn't even feel that I was moving. I knew I was in the wrong state of mind and it was like half of my mind was all weird and the other half was just laughing at myself. I just got out of that odd state of mind and I am VERY tired. My surgery keeps getting moved around along with my pet scan. As of right now on Tuesday I'm getting my surgery done and I'm getting my pet scan on Thursday. I think that the medication that they put me to sleep with messed up my veins...All I want is for this to go right...I don't want to be stuck every morning...I can't stop crying anymore. I wanted this to go right so I wouldn't have to suffer as much...What on earth did I do to deserve this? I don't wanna do this anymore...

My Unknown Illness...

Hi, I'm Savannah. I am 13 years old and live in Georgia. I have been in the hospital for basically four months. In those four months so much has been done, then again so much hasn't. Every doctor that I meet or that has viewed my case have said that they have seen nothing like it in all their careers! Dr.V (a surgeon in UAB) had done some surgery on me and said that there are special cases, but mine is very special. They think that I may have had this all my life, but some say that they think that it may have been started by a virus I had this past summer. Thats not true though, because my body wasn't allowing myself to eat since I was in 7th grade. This illness all started out as severe pancreatitis, but months passed by and it's one thing after another, and things aren't fitting together as they should. I have some doctors saying it's cancer and others saying it's auto immune. I have had about six biopsies so far, and I am going for another one on Tuesday. Plus on Tuesday they are going to get bone marrow while I'm under for the biopsy and look at that as well. So far I have and/or have had: pancreatitis, granulomas, pericardial infusion, liesions in my left kidney, blood in my liver, my common bowl duckt to my pancreas won't stay open causing massive pain, I may have a stricture, I have weird pain on my lower back and around my ribs below my breasts, and a lot more. I have to take so much medication that I almost puke every time I take them. I am on: Dilaudid, Methadone, Zantac, Prednisone, Neurontin, Zofram, Phenergan, and Actigall. The biopsy that they had sent to California came back today saying that they had found a lymphoma cancer cell, but that can't be true because wouldn't they have found a tumor by now? Me, my family, my friends, and the doctors aren't claiming it until we see it in black and white. Oh, I'm getting a power pick line in tomorrow. This sucks, because I can't eat anything until I get it in. I will write more tonight or tomorrow...