October 29
My mom, dad and I left right after school and headed to the airport. We arrived in St. Petersburg at 10 pm at the Ponce De Leon Hotel. It wasn't what we were expecting to say the least. The room was nothing like the pictures online. Our room included beds with red velvet headboards...I felt like I was in a hotel Elvis would have liked. We decided to just go to bed and switch hotels the next day.
October 30
Today is my first consult with Dr. Piper at 7 a.m. I was nervous but ready to get things rolling so I could get back home...I was already missing everything. It was a long and stressful day to say the least.
- It started out with CT scan, molds to put in for my MRI, impressions of my teeth, and a nurse ran through my paper work with me and asked my questions. Then my parents came back and we met Dr. Piper. He looked at my paper work, did an exam and talked with us for a little bit.
-Then I was off to get an MRI which I wasn't looking forward to at all because my first one wasn't a good experience. The nurse was very nice and talked me through everything. MRI's are painful for me because my neck is in an uncomfortable position for a long period of time which produces severe pain, not to mention I am extremely claustrophobic. I just closed my eyes and prayed and told myself this was the last time I would have to do this. I knew it was almost over when she came in to inject some fluid in my arm for the contrast part of the MRI.
- After it was over it was time to go back to Dr. Pipers to watch a video explaining TMJ disorders and the anatomy. Then it was time to talk to Dr. Piper about our options and look at my scans.
-When the consult was over we went to a new hotel and as soon as I got there i pulled back the covers on the bed curled up in a ball and went to sleep until around 10 and decided I should probably get some food. After that I went in the hall and called Grant. He was worried about me and I hadn't texted him all day but my mom had told him what was going on. He tried to calm my fears but I didn't even want to think about the possibilities because the thoughts made me want to cry. The word tumor kept popping up in my mind but no one would say it. After talking to him for an hour and trying to hold back my tears and be strong (and failing) we said goodnight and went to bed.
October 31
- Our next step was a brain and spine MRI at 9. This lasted 2 and a half hours and seemed like it lasted forever because it was very painful. After 2 hours I was done I couldn't lay there any longer I was in so much pain. When she came in to give me the injection, I asked if I could sit up and she said no but I broke down in tears because I couldn't lay there one more second. I'm not one to cry in pain, I am more likely to get angry to deal with it. I have a pretty high pain tolerance, Iv'e had chronic pain since I was 7, so when I cry its pretty bad. She let me sit up and I drank some water and got a pain killer from my mom then I layed down so I could finish.
-Next was our appointment with the neurosurgeon at 2. When we got there she found nothing on the scans to worry about my adrenal gland was slightly enlarged, but normal size for a teenager. The fluid on my spine was nothing to worry about and I had a pineal cyst that she wasn't worried about and just told us to get it looked at in 6 months.
Give thanks to the LORD, for he is good; his love endures forever. Psalm 107:1
We were more than relieved at this news and were grateful we could move on with surgery, so I could finally be pain free!
November 1
-Today my dad flew back home to be with my sisters and go back to work, so me and my mom were on our own. We thought we would finally get to sleep in today and relax all day but we had to got to pipers to watch a pain video from 12-2. Then we drove to get the key to the condo we would be staying in, went shopping for some food because we hadn't had a meal since we had arrived in Florida, then finally to our condo. The condo was nice, it was on the beach with two rooms and a deck overlooking the ocean. I think we were both happy to settle in to were we would be living for the next 14 days!
November 2
- Today was warm and I wanted to get outside and get a little bit of a tan. I did for awhile but I also had to do some homework. I had to read "The Joy Luck Club" in the next two days and hadn't got the chance to start it yet. I layed in bed and read half of it today. Not what I wanted to be doing but of well.
November 3
-Today was warm again but a little windy we tried to lay out on the beach but I got cold and went inside. I finished reading my book which is extremely boring by the way and tried to start my accumulating math homework. I got an assignment done but gave up after that because math is hard for me and to completely teach myself was taking forever, so I decided to wait until I could copy someones notes and understand it. I don't remember much from Friday and Saturday but my mom said I was quite and depressed and didn't talk to her. I was missing home and missing dance and that Saturday was our Student Councils Senior Citizen Prom which I love going to but had to miss. I think it was sinking in that I was going to actually have surgery the following week.
November 4
-Today me and my mom went to a new church and quite the experience. We walked in and the pastor knew we were coming because he knew our pastor and they had talked about my surgery. He was very kind and inviting. We sat down and a man came up to us and introduced himself and asked us for our names and why we were there and wanted to know all the details about my surgery, when it was where, and the time. At first we didn't think much of it but through out the service he kept talking to us. During the sermon he taped on my shoulder and asked me what grade I was in and asked my mom for her name again. At one point my mom was writing an attendance card and she glanced to see where the offering plate was and he jumped up and asked her what she needed really loud. My mom and I do not like to be the center of attention at all and we were a little embarrassed. When it was over he didn't let us leave and he introduced us to his wife and daughter. His wife asked me all about my surgery and proceeded to tell me I couldn't leave until she prayed for me, which would have been okay. However she put her hands on either side of my face and took my head and put it on her chest which was extremely awkward. Her prayer was quite strange, she acted like she was healing me. She was screaming, "Ive seen the blind see, and the dead rise and Lord you can heal this girl". It went on and on like this for several minutes and finally my mom stepped in and said I think you're hurting her it huts to touch her face. Then she freaked out and kept asking "Did I hurt you?" and I said no it's fine but she kept persisting. We finally got away, and had this feeling that they were going to show up at my surgery since they asked several times when where and what time it was. When we finally left my mom couldn't get over it, she kept taking about and I just laughed at her. She likes to retell this story, at the time it wasn't very funny but now it is. We went to target after and bought ensure and different protein drinks for the 6 days I couldn't eat.
November 5
- Dr. Jackson's at 8:30 a.m. for braces
-I was not in a good mood this morning. I was in no way happy about getting braces after having them for 4 years in grade school. I think I was more upset with the fact that I didn't know. If I would have known before I could have accepted it and been fine with it. Dr. Jackson and his assistant were very nice I just upset and laying in the chair was painful on my neck and while I was getting them on they told me that most people have to get bite correction braces ofter the 9 months of the first braces. I was pretty upset I don't know why this upset me so much but it did, I think I was thinking, great I'm going to go off to college looking like a middle school girl. I had silent tears streaming down my face that I felt I had no control over.
-Dr. Pipers at 1:20 p.m.
-Lisa went over our paper work for surgery and asked me if I wanted to know what would go on or not and I definitely did, so she explained the details. She talked to me about what he would do during surgery and how I would look afterwards. She told me I would be wired shut and have my splint in and that I would also have tubes in my neck draining blood from my joint into a bag that I would be stuck in the pocket of my gown. We also talked about how after surgery I would have to get up and walk every 30 minutes as soon as I got up to my floor. We asked about the possibility of throwing up and how that would work since i couldn't open my mouth. She assured us that they were going to give me medicine to prevent it but if I did it would find a way through the splint. This worried me a little because I don't react well to medicines and I thought there was a good chance I would throw up. She told me that I would be on a liquid diet for the first 6 days and the splint wouldn't come out at all during this time.
-Edward White Hospital at 3:00 p.m. for lab work
This didn't take too long and I had a really nice guy to take my blood. Soon I was back "home" and I saw that my mom had a blog pulled up on the laptop called grin and bear it. It was by a lady who had the same surgery as me done by Dr. Piper. I started reading about what it was going to be like tomorrow and the recovery. Her blog was really helpful in preparing you what to expect, there are a ton of great pictures and I would recommend anyone to visit the blog if they are having this surgery. Finally I got ready for Grant to come and cleaned my room and took a shower. It was hard to fall asleep knowing Grant would be here tomorrow and as for my surgery I didn't really want to think about it any more.
November 6
-Grant and Dad Arrive!
I was so excited to see Grant, this morning couldn't have come soon enough. The whole morning I was anxious for him and my dad to get there. My mom insisted I get out (in the pick up lane at the airport) and get and picture, but I'm glad she did. I really needed him as a distraction this last day before surgery, and I think you can see on my face that I was beyond happy.
As soon as we picked them up I had to go get my braces fixed because I had a wire sticking out and it was cutting my lip. Dr. Jackson commented on how much happier I was today since Grant was there and he was right. I was in such a better mood with him by my side. Then we off to my first physical therapy appointment, which I wasn't all too thrilled about, since my past experiences hadn't been the best. We got there and the lady was super nice, she had the same surgery as me twice by Dr. Piper. I was tense when she was working with me because the other therapists had created my neck and back pain. So she got one of the girls working there to do a dance for me because she knew I was a dancer and it made me relax enough for her to work with me. She popped a lot of my ribs back into place (which is a really weird feeling) because they were not in the right place. She also did so work with my neck.
When that was over we decided to go out to eat for my "last meal" before surgery. I decided on Olive Garden because I love there food. Me and Grant could decide between spaghetti and fettuccine alfredo, so we each got one and shared. The salad tasted so good, especially knowing that i wouldn't have any for a long time, and of course the bread sticks. My teeth were sore from getting my braces the day before so we got them extra soft. And we got a free dessert because it was voting day!
After we got back to the condo we got Grant settled in. My room had two beds so he took one of those. Then we talked for a little bit and went down to sit in the hot tub by the pool. They aren't my favorite but Grant loves them and after surgery I wouldn't be able to get in on because of the incision in my tummy. We stayed down there for a long time just talking. I was a little frustrated because when I came to Florida I had no idea what would go on. My mom didn't tell me things because she thought she was protecting me from worrying because that is how she would be. But that is not how I am at all, I need to plan and be prepared. I had no idea I would have braces for 9 months or that I couldn't chew that same amount. I had the impression that I would be "wired shut" for a month or 2 and then I'd be fine. I need time to process and accept what was going to happen. Talking about it helped and then we went back up to our room so I could get ready for surgery. After packing and feeling like I was as ready as I was going to be, we layed around taking and relaxing. He asked if I was scared and I said kinda but not really. I knew what was going to happen and I knew that God would be there holding my hand. I was more upset about after surgery...I selfishly didn't want things to change. I liked things the way they were(except for being in pain) and I knew that my life was going to change and I didn't want it to. Grant assured me that things would get back to normal and that he would be with me through it all.
November 7
-SURGERY DAY...FINALLY!
-Today was an early morning and after brushing my teeth and putting my hair on top of my head we were off. We had about a 20 minute drive to the hospital so I put my iPod in and listened to Chris August for a distraction.
When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire you will not be burned; the flames will not set you ablaze.
Isaiah 43:2
-Once we got to the hospital we waited in the waiting room for what seemed like an eternity and then finally a nurse took me back. She had me put a gown on and then she asked some questions and then another nurse came to do my IV. She was nice and put a numbing medicine in my vein before she did the IV so it wouldn't hurt so much. She tried the left hand first but had to take it out and do it on the right . She finally got it and my parents, Grant, Daniel, and Amanda. They all stood around kind of awkwardly not knowing what to say and then Daniel said a prayer for me. Then the anesthesiologist came and asked me questions and not realizing Daniel just said a prayer told him he could say his prayer now before they gave me medicine, so he said another one. Surprisingly I wasn't really nervous I could feel God holding me and I knew I wouldn't feel anything until I woke up.
- After they gave me my medicines I don't remember much it felt like I fell asleep for a minute. I remember waking up and thinking that I was still in surgery and I wasn't supposed to wake up yet but I was in the recovery room. I tried to stay awake but I kept going it was hard to keep my eyes open. The nurse was nice and when she asked me if I had any pain I couldn't talk very well so she didn't get what I was trying to tell her at first. My neck (surprise surprise) hurt really bad, and to top it off I had awful cramps and my back hurt. I knew I was about to start my period but she didn't get what I was telling her. Next I woke up in my room with everyone around me Daniel gave me a little stuffed monkey and I was really out of it. I looked down at my hand and where there was a little blood from my first IV try, and it was crawling all over my hand and I thought it was a seed tick, and kept trying to get it. They didn't know what I was saying but i kept pointing because I was really concerned about this tick and they thought it was funny especially Grant. Which made me mad because in my mind there really was a tick on me. After that I woke up and it was just my parents and Grant, I knew almost immediately that I had started my period and I needed to take a walk, so I tried to get up and it made me really nauseous. In the process I had to go to the bathroom and they didn't have tampons so my dad ran out to the car and grabbed some, as I struggled to walk to the bathroom without puking and hold the bag of blood so it didn't pull the tubes in my neck and roll my pain pump...and put a tampon in. I'm sure I was quite the scene but somehow I managed to do it, along with Grant and my moms help. Then I sat back on the bed and puked and had to get right back up to walk down the hall. I was so weak and I couldn't see straight because my eyes were so dry i couldn't keep my eyes open all the way. This went on every half an hour. I had to get up and walk which was difficult because I could barely stay awake and every time I got up I started puking. They also had to keep fluids in me so they gave me ensures and juice which I would just throw up and I did not want to eat, but I knew I had to so I would try and get the whole syringe of liquid down when they gave it to me. One time I remember waking up and they were trying to get me to walk and when I sat up I start puking. Puking was painful and it made me nervous because my mouth was completely shut by my splint and it was at first it was blood which was normal but didn't feel so normal. Grant was rubbing my back and telling me it was okay and Dr. Piper walked in. He told them to stop babying me and to get up and walk. I was thinking really? I'm puking my guts out here but I know that he was doing what he thought was best for me, because you recover faster if you are up and moving. So I got up and walked puking as I walked down the hallway. My parents and Grant had a hard time waking me up every half hour because the medicines completely knocked me out. Once night came I couldn't sleep. The morphine made me so itchy that I couldn't even sleep now. I had ice around my head for swelling but it needed changed often because when it melted it got heavy and hurt. Grant was trying to take my ice off to change it and he accidentally pulled on of my tubes in my neck in the process. It hurt so bad because the tube came out farther and I was so mad. It was a complete accident but I was furious with him. All the medicines were getting to me I think. I didn't sleep almost at all that night.
November 8
-Dr. Pipers at 8:00 a.m. for CT scan and check up
-I was exhausted this morning, I didn't get more than an hour or two of sleep here and there. I tried to get some fluid down, water tasted so good because my mouth was so dry. As for the supplement drinks, not so much. I had thrown them up so much, and they don't taste good in the first place but I just swallowed them anyway. Next I got out of my gown and into my own clothes. Then the nurse came in and took out my IV and the tubes in my neck. The one tube that Grant had accidentally pulled hurt really bad when they took it out because it was really sore, but the other on wasn't bad they just had to cut the stitches and pull it out. I was free, finally. They took me down in a wheelchair and Grant was pushing me at the end and we went over a bump it get out the door and it jerked and it hurt my belly. I jumped up and walked off to the car without waiting for anyone. I was not in a good mood, I'm blaming the medicines. We were off to Dr. Pipers, I don't remember everything but they took a CT scan and a nurse cleaned my neck incisions which hurt because they were so tender. She took out the cotton balls deep in my ear and cleaned those incisions too, which also didn't feel so hot.
-Therapy at 10:30
-If I remember correctly we did diathermy and heat on my back. They said the diathermy reduced the swelling in my face and I looked a lot better. I just wanted to get home to a bed.
November 9
- Dr. Pipers at 8:30 a.m. nerve blocks in front of my neck
-I wasn't thrilled with getting these but if Dr. Piper thought they would help I was willing to try them. I wont lie they were not pleasant. The needle is pretty long and it takes him quite awhile to inject all of the medicine. When they were over he asked how I felt and I said I was the same. He then asked if I was numb and I wasn't at all...I wanted to be but I wasn't. Dr. Piper was confused because almost everyone he has done nerve blocks to get numb. Like everything else I'm just weird.
-Tonight my parents and Grant took me to a park. I don't remember most of this trip I was pretty knocked out on medicines. I do remember getting really car sick and when we got there I didn't even get out. This was the start of feeling really bad. When I got home I felt sick and all I remember is going to sleep.
November 10
-Grant leaves :(
- This was a really bad day for me. I woke up sick and I felt like I was going to throw up. I had to take my medicines and supplement drinks anyway. I couldn't keep anything down, I was throwing up everything. Since I didn't have any pain medicines my pain sky rocketed, and throwing up today was scary. I had big chunks of brown stuff coming out and remember my mouth is completely closed so I couldn't get a lot of it past my splint. I started panicking because I couldn't breathe because my mouth was clogged and it was also coming out of my nose (gross i know). I was trying to communicate to Grant and my mom that they needed to cut the rubber bands off my front teeth so the puke could get out. Grant ran and got scissors and while I was puking he cut them off. I was still struggling getting all of the chunks out. He stood by my side and was pulling chunks out of my mouth for me. How many boyfriends would do that? Once I used my waterpik and cleaned my mouth out as well as I could with it wired shut, I layed down exhausted. My mom called Dr. Piper and he was very confused why there would be chunks in my puke since I was only getting liquid. He asked if I had pooped since surgery, and I hadn't. He told us I needed to or I needed to do an enema. I tried but I couldn't so I told them to just go and get the enema. He also said if I kept puking I needed to get a Finergin through a suppository. I tried to do the enema on my own but it didn't work. My mom called my sister Jessica who is in school to be a nurse and said if it didn't work than I didn't do it right and explained to my mom how to do it. Normally this would have been awkward but at this point I could have cared less. After I did finally poop but I didn't feel any better. I was so physically tired and in so much pain. I went and layed my head on Grants lap, who at this point I think felt helpless to help me or make me feel better. I was rating my pain at a 10 and he wanted me to go to the hospital but I really didn't want to do that. Little did I know that it was time for Grant to leave and I got upset because I needed him, he is always my rock and the person I lean on. He told me please don't cry but I couldn't help it I was really upset. He had tears in his eyes and I knew as he was walking away that he was crying but didn't want anyone to notice it broke my heart that he was so upset. Once my mom got back I was still feeling awful so my mom gave me the suppository, so hopefully I could stop puking. At one point I walked in my moms room and fell in her arms and started crying. I have never been a very touchy person or dependent on parents, even since a child, but I was feeling awful. I was sitting in my bed with my mom and dad standing with me and at this point I still wasn't talking and i wrote on my board "I can't do this anymore" through my tears. My mom and dad discussed going to the ER but I really didn't want to go back to the hospital. Finally my mom said "I think we need to pray". We all held hands and my mom prayed for the strength to know what to do and for me to feel better. After a little bit, I knew I had to get up and walk and eat so. I got a 7up (I hate soda but it felt better than water on my stomach) and started pacing the condo from one wall to the other. The only way I was able to do this was through God carrying my because I was more exhausted than Ive ever been. If I remember correctly I ate(drank) a little bit before going to bed.
November 11
-Jessica arrives late tonight :)
Today I am feeling better than yesterday and tonight we decided to take a walk on the beach. It felt good to be outside and get some exercise after yesterday. With my mom and dad trailing behind me I walked a mile listening to Chris August on my iPod. I felt like I could walk more and was proud of myself because getting out of bed and taking a shower was still a major struggle. My sister Jessica arrived late tonight and this is the first time since my surgery that I really talked. I was happy that she was there and wanted to talk to her. They kept laughing at me because I had to repeat everything 2 or 3 times before they understood what I said. Thank God today was a better day. I could see a light at the end of the tunnel, I just wish Grant was here to see it, because when he was here I know I wasn't very nice to him. He told me later that I would shoo him away and he would go to my mom and say she doesn't want me. She would respond by saying your hardest on the people you love the most and it's true. I know when I don't feel good a lot of times I just want to be left on my own. He is so amazing for flying to Florida and dealing with me on my worst days.
November 12
-Dr. Piper's at 11:10 for a follow up and more nerve blocks
Today I got my wires cut and got to take my splint out for the first time. It felt very strange but good to be free for just a little bit.
-Therapy at 2:30
After therapy my dad got me spaghetti from olive garden my my first break with non chew food. Jessica helped my take my stuff out and exercise fast so I could eat.
I remember walking out and saying I want more than that and they laughed at me. I hadn't had real food in what felt like forever and it tasted really good.
I only had 15 minutes so they cut me up some more spaghetti because it was gone in no time. You can see I was still swollen and I always had a paper towel in my hand because I was numb on the right side of my lip and above it. So I was always getting stuff on my face and when I drank it would dribble out some. Whenever I would stick my hand out and put it on my face they knew I needed a towel. It felt weird to talk for the first time and hear my normal voice. The 15 minutes was hard to finish everything but was so much better than drinking liquid, that is for sure.
November 13
- Dr. Pipers at 11:10 for a follow up
-Therapy at 1:00
I took my first of many breaks outside of my "home". I ate really quick before therapy with my moms help because laying out all of my stuff in a public bathroom isn't very fun. I dont remember any more about this day. My mom said I slept alot I still wasn't feeling good and my medicines made me so tired.
November 14
-Dr. Pipers 8:00 am for a follow up and nerve blocks
Today was not a good day at Dr. Pipers. I did not want more nerve blocks because the other 4 had not worked, but my parents and him said if it's going to help your pain why don't you just let him do it. I knew in my mind that they weren't going to work if the others hadn't. But I let him do them anyway. After no success he was still baffled at why they weren't working on me. When we were walking out he asked if I was mad at him and I nodded, and he said that's okay. He still thought I could have CRPS or RSD. He told me that if dancing hurt my neck then I could not do it, and responded that I was not going to not dance. And he said that if I have CRPS then the pain in my neck would affect and damage my fat grafts and that dancing wouldn't be worth it. At this point I couldn't take it anymore I walked out on him talking and went to the bathroom and started balling. Dancing is my world. I do it everyday and have since I was three. This is my last year and I felt like my world was crumbling. When I got back to the condo I went to my room and layed in my bed furious and beyond upset. I wouldn't talk to anyone and yelled for them to go away. Just when I think it was getting better, this happens. I was angry with Dr. Piper angry with my parents, angry with God. They kept telling my to get up and walk and eat and I wouldn't. I just layed there. Finally I wanted them to leave me alone so I got up and ate then went back to bed. They kept trying to talk to me and make it better. But I wasn't going to listen to anything they said. My stubbornness wasn't going to let anyone in. I just wanted my life back. Later that night I got out of bed with the encouragement of Jessica and took a shower and then she helped me pack. Then we sat in the living room watching Duck Dynasty which made me laugh and she painted my nails. I felt a little bit better but could feel myself sinking into self pity and depression. I wanted so badly to be the normal person and get better like I was supposed to.
November 15
GOING HOME!!!!!
Today I am flying home and couldn't be more happy to leave Florida for Missouri. I also went to the chiropractor today for a procedure to try and realign my cervical spine. I was giddy and couldn't stop laughing when I was there, I think I was a little excited to go home. I needed food at the airport so I got a peppermint mocha frappichino from Starbucks. It was a little hard to drink through my splint because chocolate kept getting stuck in the hole of my splint, but it tasted so good. During the flight I couldn't sleep even with the Bendryl I took, I was too excited to see Grant. When we got to St. Louis Grant and his mom were waiting for us.
Today I am flying home and couldn't be more happy to leave Florida for Missouri. I also went to the chiropractor today for a procedure to try and realign my cervical spine. I was giddy and couldn't stop laughing when I was there, I think I was a little excited to go home. I needed food at the airport so I got a peppermint mocha frappichino from Starbucks. It was a little hard to drink through my splint because chocolate kept getting stuck in the hole of my splint, but it tasted so good. During the flight I couldn't sleep even with the Bendryl I took, I was too excited to see Grant. When we got to St. Louis Grant and his mom were waiting for us.
No comments:
Post a Comment