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Saturday, August 28, 2010

Surgery update

Wednesday was surgery day! Tuesday night, the night before surgery, I did not sleep well at all. I guess I was nervous and excited! On Monday they told us to be at the hospital at 9:30 am for surgery at 11:30. On Tuesday they called and said they changed the time to 9:15 am. Haha really? Did they really just call to tell us to be there 15 minutes earlier? We thought that was really funny!
My brother went with us to the hospital and didn't have to go to school. He owes me big time. Because of my surgery he didn't have to go to school!
So Wednesday morning, we got to the hospital at 9:15 am. We filled out all the paper work and everything which took quite a while. I still don't understand why checking in takes so long. The lady checking me in was a little tired I think because she kept asking questions twice...it was funny!
When we checked in, the hospital gave me the bear on the left! How sweet of them. One of my friends brought a balloon with the frog!
While we were checking in, a couple of my friends came to the hospital! That helped passed time! They took blood while we were checking in and man did that hurt! She had to dig around to find my vein as always.
Finally after checking in we got to my room! I love the way this hospital is set up. Since it's a smaller hospital, you get your own huge room before surgery and the same one after! It's not like the hospitals with curtain areas. The rooms are very big and nice!
My nana got to the hospital right before we got to my room! Once we got to my room, several more people came! There were a couple of elders from church and some friends. My other grandparents came and brought donuts and drinks for everyone! Too bad I couldn't eat or drink. I almost kicked them out but I decided I shouldn't do that. Aren't I nice? I think so!
I was put in the same room as when I had my port surgery last October!
My nurse came in and said, "I remember you! I was your nurse when you had your port surgery. And you have Lyme Disease!". We laughed and couldn't believe she remembered me. But then we realized that she has probably never had a patient besides me with Lyme. She was so nice! We loved her.
She had a hard time getting my IV started and ended up putting it in a weird place. I'm used to getting IVs obviously and they usually don't bother me but this one hurt so much! The vein was deep in my arm and I thought the needle was going to come out of the other side of my arm!
Once she got the IV started and asked a million questions it was time to take me to the holding room. They took me to holding at 11. Only my mom and dad could go with me. The nurse who took me to holding was impressed with how many people were there for me. I told her how great our church family is!
The surgeon came to talk to us in holding. There was a problem because the only thing I'm not allergic to is alcohol to clean my skin with. They have to use 2 different solutions to prep with to make sure the incisions don't get infected. So we had to pick one that I was allergic to. Thankfully I haven't had any problems! I do have a little rash from the bandages they put on my incisions.
My surgeon looks and probably is very young so my parents joke that the only surgery he has ever done is with the game Operation. But so many people have said he is a great surgeon so we weren't too worried!
They wanted to make sure my heart would be okay with anesthesia so they did an EKG right before I went to the OR.
Next, the anesthesiologist came to talk to me. Then she asked the dreaded question. Why do you have a port? We told her I have Lyme and she immediately said I thought you couldn't get that here. Oh no! Here we go again... We explained that we have talked to one of the best tick specialists in the state who works at Oklahoma State University and travels the world studying ticks and she said that Lyme is definitely everywhere including here. Then the anesthesiologist changed completely. She said she went to school in the northeast and saw so many Lyme patients. Once she moved back to Oklahoma, she thought she had Lyme Disease because she got a tick bite and had the symptoms. So she went to a doctor here and they told her that was impossible. She believed them because they "know everything". We told her a little about my story and she said she now believes she actually could have Lyme. She said she would get tested. After we finished talking, we heard her telling all the other nurses and doctors that were in there about it!! We were so excited that she understands now and will help spread awareness!!!! We really liked her! I really hope she finds out if she has Lyme and starts treatment soon. We heard her say she is on some natural medicines to try and help her symptoms.
I told her that last time I had surgery I got sick afterwords from the anesthesia. She put a nausea patch behind me ear that would last for 24 hours!
At 11:30 the nurse came to give me some medicine to help me relax. Once it kicked in I said goodbye to my parents and they took me to the OR! I remember a lot from the OR. They all introduced themselves to me and I moved over to the operating table. They started to get things ready while I was still awake! We talked about random things while they positioned my arms. My right arm went straight out to the side and my left arm was down like normal. They they put things around my arms to make sure they didn't move. They did a few other things too while I was awake. Finally, they put the mask on me and I was out of it! I can't believe I stayed awake for that long and actually remember everything! I was awake for probably 10 minutes!
I woke up in recovery and was wide awake. Recovery is not what I expected it to look like! I also remember recovery very vividly. I woke up with oxygen and the nurse left it on me for quite a while. The only other time I've had surgery, I remember nothing from the recovery room. I remember waking up completely back in my room. But this time I was in recovery for 2 hours and was wide awake the whole time. My pain level was off the charts but they had given me all the medicine they could. They couldn't take me out of recovery until my pain was under control. I ate a whole cup of ice while I was in there! I always pictured recovery with curtain areas for each patient. This was just a huge room and the beds were side by side randomly spread out. I had fun watching the other patients who were not awake but were talking. It was entertaining! The nurse got mad at me because my pain wasn't under control after she had given me everything I could have. We think she might have been giving me pediatric doses because every time she gave me medicine, I didn't feel any different. Every other time I've had IV pain medicine, I can feel it make me heavy. I did not feel any different after several doses of what she gave me.
After a couple hours my pain was under control so I got to go back to my room! The pain came back so fast but the only medicine I could take was oral pain medicine. That meant that I would have to eat something. I started eating some crackers and got so nauseous. That did not go well!
After I was back in my room, my surgeon came to check on me! We thought that was so sweet! I was in surgery for a little over an hour I think. He said everything went as planned! They did cut off some adhesions from my liver too. He said inflammation can cause those.
We stayed at the hospital until my pain and nausea was under control. Before leaving the hospital I actually walked to the bathroom and changed into my clothes by myself! I'm not sure what time we came home but I think it was around 5 pm.
I got home and felt pretty good! Well, pretty good for just having surgery. I slept for a while when I got home and had several people visit.
I'm not allowed to go upstairs for a while so I've made my home in the recliner in the living room. Wednesday night I slept for probably a total of 2 hours.
Thursday, several people came to visit which was good! I had a pretty good day on Thursday. I've been getting up and walking a little each day to help get the air out of my shoulders and neck. My mom washed my hair in the sink so that made me feel better!
Thursday night and last night I actually slept some! But yesterday and today have been the hardest days so far. I've had problems breathing and can't seem to get the pain under control. I've tried to sleep all day but I can only stay asleep for 10 minutes at a time. It's very frustrating!
I'm trying to enjoy just being at home and doing nothing but I'm having a hard time with it. So please continue to keep me and my family in your prayers.
My friend Rebecca brought this balloon to me while I was in the hospital! I love it!
Thank you for all the prayers, encouragement, cards, food, visits, calls, and texts! We really appreciate it!!
I'm going to try to post more about non medical things in the next few days since I haven't done that in a while!

Monday, August 23, 2010

Family pictures!

I can't remember if I ever posted these...so if I didn't, here are pictures from when we were at the beach for Christmas! And if I did post them before, here they are again!
I made this with some of the pictures!









Surgery on Wednesday!!!!

We met with the surgeon today and we love him!! My surgery is scheduled for 11:30 on Wednesday! He said recovery is going to be hard but in the long run it will be so much better to have it out. I can't wait to be gallbladder free!!!!!!

Thursday, August 19, 2010

We found the problem!

After spending all week at the hospital for tests we found out that my gallbladder is what is causing all the problems! I'm so glad we found it out. The Hida scan yesterday is what showed the problem. For that test they inject radio active stuff into your IV and then watch it fill your gallbladder on the screen. You lay under a machine. Then they give you another dose that acts like what happens when you eat food. It was very painful and I got so nauseous. Today I went for an upper GI test but when I told them my symptoms they sent me to my regular doctors office to talk about the results of the Hida scan. My gallbladder is not working as well as it should so it needs to be taken out. We meet with the surgeon on Monday! I'm so glad we found out what's wrong and are getting it fixed soon! All I've done this week is lay on the couch and go to the hospital for tests. I've been at the hospital so much. I walk in and we don't even have to do the routine paperwork everyday because they know me so well. They just give me my bracelet and we are good!
I'm having to stay on strong pain medicine because the pain is so intense.
I did get to go to church last night which was very hard but I did it. We did something called cardboard testimonies. About 30 of us went in front of the whole church during worship and share part of our lives. On one side of the cardboard you put a struggle and on the other side you put what God has done through that struggle or sin.
Mine was
"On dark road of stage 3 Lyme Disease"
And on the other side I put
"Jesus lights the way for me!"
It was such a great night and such a blessing! I'm glad I got to go and be a part of it!!
I will update after we meet with the surgeon!

Tuesday, August 17, 2010

So many tests...

Sunday was not a good day. I was in so much pain. My side and stomach and back hurt so much that I was crying despite all the medicines I was on. So off to the hospital we went. When we got there, they hooked me up to an IV and got me on some pain and nausea medicines. I had to have five things of morphine before the pain went away. They did blood work so we had to wait on that before we could leave. My blood work didn't show an acute infection so they couldn't do any more tests on my abdomen or gallbladder. As they were fixing to get my discharge papers, I turned over and the pain came back. They gave me more pain medicine and finally after 4 hours we got to leave. We got home around 5pm Sunday. The pain was under control for a little bit but then came back really badly. We tried everything to try to help the pain. Finally at 10pm we called the doctor because I was crying and in so much pain. They told us that they would call the hospital and tell them to do an ultrasound. So we went to a different hospital this time! They did the ultrasound and got me pain medicine stronger than morphine and nausea medicines. It helped but it wore off so fast. We were there for a long time just trying to get the pain under control. The doctor there was so so nice. We loved him!! Apparently a lot went on but I was too drugged to remember. I remember alarms going off and people would come tell me to breathe. We got to come home at 4am.
I'm on a very strict diet and can't eat almost anything. I'm still feeling weird from all the meds they gave me in the hospital.
Today we went to the hospital for my tests. We discovered a problem and so we rescheduled some tests. Today I had an ultrasound of every organ in my abdomen. That was kinda painful!!
Tomorrow I go to have a HIDA scan which scans the gallbladder. They inject radio active dye through an IV and watch the gallbladder.
Thursday I go and do a GI test where I drink that nasty drink and they watch it go through. Most of the times they just watch it go through the stomach but for me they are watching it go all the way out. This could take up to 8 hours.
At midnight the night before each test I have to stop eating and drinking.
I will update when I know anything! I'm on a ton of medicine just to make it until we figure out what is wrong! Please keep praying! Thank you!

Monday, August 16, 2010

Update Coming Soon

Yesterday I was in 2 different hospitals and it was an insane day so I will update later, once I can see straight and these medicines go out of my system!

Friday, August 13, 2010

Not again...

-UPDATE-
The doctor just called and said im scheduled for tests Tuesday morning at the hospital. They will take 4-6 hours.
This is going to be quick! Yesterday started out not very well. I was in so much pain in my stomach. I cried for a while because of the pain so my parents took me to the doctor again. He did some blood work to check some organs (I forgot which ones) and a few other things. I got some more medicine to try and help calm things down. He ordered some GI tests to check for infection of the stomach lining and ulcers and things. I'm in a ton of pain still and all I can do is lay on the couch. I'm still on that nasty drink of pain medicine and numbing medicine so I'm really out of it. That drink dilates my eyes which is very strange! The doctor could tell I was taking that medicine because of my eyes. I also had fever at the doctors office and my blood pressure was 106/48. Hopefully we can get all the tests done at the beginning of next week and figure out what's going on.
"Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him." James 1:12

Wednesday, August 11, 2010

After hours clinic

Monday I was so tired and was having trouble breathing so I layed on the couch all day. I went to bed Monday night and woke up at 4am and got sick. My esophagus was hurting and burning and it wasn't good. I'll spare you the details but it was not fun. That went on the rest of the night. I finally got to sleep at 8am and slept a couple hours.
Ever since I went to the hospital a month ago for esophagus spasms, I've been taking medicine to help it. If I miss a dose, It is very painful and I can't eat.
When this happened Monday night we knew we had to do something because I had been taking my medicine.
So yesterday I didn't want to eat or drink because it hurt a lot and would come back up. I doubled up on my medicine and also took this other liquid medicine they gave me at the ER. I didn't help at all.
We really didn't want to go to the hospital again or be sent to another specialist so we went an after hours clinic. Of course they know me there too. The doctor there is the doctor who ordered my PICC line and IVs at home. His nephew I think has Lyme. He was a guy in the army and then all the sudden got extremely sick and had to quit. So this doctor has seen what it does to people. He doesn't know how to treat it, he just will help in any way.
We went through everything that has happened the past month and he said I probably have a hiatal hernia. Yeah I didn't know what that was either. He even had a nice picture of it...
A hiatal hernia is when the top of your stomach comes up into your esophagus for whatever reason. There is a muscle that keeps your stomach from your esophagus but if that muscle is weak, your stomach will come up through it, causing a hiatal hernia. This also means that the acid that is in your stomach no longer has a muscle to keep it in your stomach. That is why I couldn't eat or anything because my stomach is just open so acid continues to come up.
I know that is more than you want to know! He said that since this has been going on for so long he is worried that the acid has done damage to my esophagus. Obviously stomach acid is supposed to stay in the stomach and will erode the esophagus.
He is switching me to a prescription medicine (I was just taking an over the counter medicine) that will hopefully help. He also gave me a prescription for the drink they gave me in the hospital. We didn't know you could actually have that at home!
It's a real tasty green mixture of lidocaine and a few pain medicines. It might be the weirdest thing I've ever taken. Your mouth and throat and esophagus stay numb for a while until the pain medicines kick in. And wow they hit fast! I was laying on the couch and all the sudden got so hot and tried to lift my head and bam! I realized I wouldn't be lifting my head for a while. It made me so loopy and tired. Finally after a while I could get up and I went to bed early!
I'm really hoping that the new medicine helps!

Sunday, August 8, 2010

Where I spend a lot of time

I thought I would show you where I spend a lot of my time. My room. I've spent weeks up here bedridden. I've spent lots of hours hooked up to IVs in there. But while I've been on IVs or bedridden I've also had lots of fun times in my room playing games and watching movies or tv with people who come to visit me! I love my room!!!! It's so cheerful!
My room is upstairs which I like! Climbing the stairs is sometimes quite a challenge but I like being upstairs. This is what you see when you first walk in the door.

My room is pretty big and a great shape!
As you can see, it is a tropical theme! I love the beach so much!!


At Christmas time, and sometimes other times, I will come home to find that there are Christmas lights on my palm tree. I will give you one guess as to who does that.
If you guessed my brother you are correct!

My window seat!

There are some cards that my brother put above my bed when I was at the medical center in Nevada one time! These are like 1/12th of the cards I have gotten. I love reading them!!


I forgot to take a picture of my karaoke machine but I think you know what that looks like! I used to do musicals and voice lessons so I have used that a lot!!

Thursday, August 5, 2010

Rambling about nothing

I am so ready for all my favorite shows to begin again. When I don't feel good all I can do is watch tv, and let me tell ya, there is nothing on in the summer.
School starts in two weeks. What does that mean for me? Nothing really. Except that all my friends will be starting their senior year.
I would be starting my senior year in high school too, but thanks to Lyme Disease I'm not going to school anymore.
I haven't been to school in a year and a half. I miss it. A lot.
Instead, my days are filled with IVs, medicine schedules, shot schedules, and way too much fun. I would definitely go to school over that.
Also with school starting, that means that for several days a week it will just be me, myself, and I at home.
Oh and my dog. But he is unconscious all day until I get out the food. Then he miraculously comes alive.
He also comes alive when there is another dog within 200 feet of our house and suddenly becomes our "tough guard dog". How he senses a dog while he's unconscious I'll never know.
Also, why are there so many people who walk their dogs all day during the school year. Shouldn't they be at work?
Oh and my mom will be home with me some days.
I am officially obsessed with Mystery Diagnosis and Untold Stories of the ER and shows like that. They are a little dramatic though. Like when a patient comes to the ER with a pulse above 100 bpm and they tell them they are going to die and they shock them to restart their heart. Uhh my pulse is 100 bpm on a good day.
They also yell to someone to grab the crash cart because the patient is crashing when their blood pressure is 90/50. That is my blood pressure on a good day. I get so excited if my blood pressure is that high!
It's weird to watch those shows and see that symptoms that send people to the ER in a panic, are just things I have to deal with on a daily basis now. When you're seriously sick, you have to change your concept of a real emergency or you would be in the ER every single day.
Well that's all I have for today. I hope you're having a great week!

Monday, August 2, 2010

Update...

I haven't posted in a while...I've been extremely tired and sleeping 12 or more hours. This weekend I had fever for no reason. No idea why!
Yesterday I went to church! I started getting a migraine at church last night and it got worse as the night went on. I went to see a movie and was miserable through it. I got home, took migraine medicine and went to lay down. I got so sick. I called my parents (I'm upstairs they're downstairs) and told them to come up there. My head and throat hurt so bad that my jaw was locked from the pain. My body ached so bad and I was shaking. I had to remind myself to breathe. My parents gave me some different pain medicine that is really strong. It took forever to work. The migraine finally went away and I was able to go to sleep. I woke up in the middle of the night and was up for a couple hours before I fell asleep again. I got up at 12:30 this afternoon. I thought I was feeling good until I came downstairs and got so nauseous. I think it's better now!
That's a quick update. I will update more later.