Okay so the next week I spent in the hospital was pretty much awful. I was in a lot of pain from having the drain in my back.... I would wait too long to ask for painkillers and the pain was excruciating ...... it literally felt like someone was stabbing me in the back. I was getting horrible headaches (probably from the fact that they had just dug around inside my head!), and I felt as if my sinuses were going to blow up because of the packing that was stuffed in my nose (the purpose of the packing was to make sure blood and stuff wasn't leaking out of my nose). Also because I had to be completely flat the nurses actually had a level to set on my bed to make sure it was level. I remember one of the nurses had an intern with her the one day and the intern bumped my bed when she was changing IV fluids and the nurse started yelling at her and immediately grabbed the level and had to fix my bed. Apparently it was extremely important that I was level because if I wasn't the fluids would not drain out of my body properly and I could have gotten a severe infection which could have actually killed me. Scary!
I was on some pretty good painkillers so the first couple days are blurry to me. I do however remember lying in my bed staring at the clock on the wall (it was the only thing I could really see) and I thought that I had seen one of my friends walk in.... then she was gone. I thought okay it is just the medication... most of my friends didn't even know I was having surgery, everything happened so fast that I didn't tell many people. I realized my mom had left and I was all by myself... it seemed like forever but it was probably only like 10 minutes. My mom walked in and told me that I had a visitor.... it was my friend, her and her mom were going to look at a school and had heard I was in the hospital and came to visit me. It really meant a lot to me to see her... I don't remember much about our visit... I just know that I was glad she had stopped to see me! I found out later that I had seen her walk in the first time but she wasn't expecting me to look as rough as I did and she started crying so my mom took her and her mom out into the hall so that she could compose herself before I seen her.... they didn't want to upset me. I honestly wish that I was able to have seen what I looked like..... it must have been rough!
Over the next week my mom was with me all day... everyday. I am not sure how she did it without going insane but she kept me going... she brought me all the apple juice that I could drink (she actually bought out every single vending machine in the hospital out of apple juice!). She has been one of the reasons that I have been able to endure everything that I have. she is such a strong, compassionate woman.... all I can say is that she is truly amazing!
I think it was the 4th or 5th day after my surgery and my Dad and Shannon came to visit. Again I don't remember a whole lot from that visit either.
Finally after about a week the doctors said that I could get the drain taken out of my spine, and the plugs taken out of my nose! I was very excited because this would mean that I could get out of my bed! I thought it would be painful to get the drain pulled out of my spine but to my surprise it actually wasn't that bad... a little uncomfortable but tolerable. The nose plugs on the other hand were AWFUL. The doctor would start pulling on the string to pull it out and it felt like he was ripping my nose out! Everytime I said "Owww! He would stop... and finally I was like just pull it out already! So he grabbed the strings and pulled them out. As soon as he pulled them out all the pressure I was feeling in my nose and sinuses was gone... it was such a relief! I can't even explain how great it felt to not have those "plugs" in my nose. I asked my mom how I looked and she got this horrified look on her face and told me that my nose was all screwed up.
I wanted to see what I looked like so my mom went downstairs to the gift shop to get a mirror so I could see myself. What she didn't tell me is that it was a kids mirror so it distorted everything. When I looked in the mirror my nose looked crooked and I started to cry... I thought that when they had broke my nose that they didn't set it properly and I was going to have a crooked nose for the rest of my life! Then she started laughing and told me that my nose was a little swollen but other than that it looked the same as it had before my surgery. I was so relieved. I am not sure why it was such a big deal to me but I was so happy that my nose wasn't all messed up! It was kind of a sick joke on my mom's behalf but I can't really blame her, she had spent an entire week in the hospital with me pretty much by herself!
The doctor told me that for the 4-6 weeks I was not allowed to sneeze, blow my nose or drink through a straw. The pressure from doing any of those things would loosen the tissue that they took from my leg and put in my head to block the wound. It was somewhat disappointing news, because all I wanted to do at that point was blow my nose. Guess I would just have to wait!
I wanted to sit up so badly, after being flat on your back for a week it's amazing how much you DO NOT want to lay down anymore! So the doctors sat my bed up so that I was sitting up, but I got so sick, the room was spinning. I had to sit in the upright position for more than 2 hours before I was allowed to even try getting up. After the 2 hours I was starting to feel better.... and my mom helped me get out of my bed. Thank goodness she was helping me because my muscles had become so weak that I could barely even stand by myself let alone walk. She helped me shuffle my way over to the bathroom so I could look at myself (all I can say is I looked rough...) Then she helped me into a wheelchair and me and my mom decided that I should go outside for a bit. It felt great to be able to get out of the bed, and out of the room. Every little bump that we went over made my whole body ache... but I didn't care at that point, I was outside!
Because they had waited until Friday afternoon to take out the plugs and stuff I had to spend the weekend in the hospital because I had to wait to see the doctor on Monday to make sure all my levels and everything was starting to become normal. For the next couple days I worked on moving around as much as I could to get my muscles working again. It was probably quite funny watch me move around, I looked and felt like a 90 year old woman. I had to hold onto the bed or hand rails along the wall and shuffle may way around. My mom wheeled me around a bit in a wheel chair too when she didn't want to wait for me to shuffle to where we needed to go.
Finally Monday morning the doctors came in and told me that I was able to go home. I had my stuff packed before my mom even got to the hospital that morning! I was so happy to finally be able to leave. The doctors were hopeful that I would go back to how I was "pre Cushings". That meant that I was going to lose weight, have more energy, and just feel better! I was so happy, mainly about losing some weight. I couldn't wait to look like I used to!
The first thing my mom asked me when I got out was what I wanted to eat... for some reason all I wanted was a nice juicy cheeseburger! I was totally elated when my mom took for for a cheeseburger. When I got my food I took a huge bite out of my burger... to my disappointment I had forgotten that because of them going in through my nose for my surgery I could not taste or smell anything. It would be at least 2 weeks before I would get the satisfaction of taste and smell back! Seriously!!! Grrrrr! Haha but I was free! Free from the hospital, the IV's, the noise, the uncomfortable beds, and the constant poking of needles. It was great!
I just love you!!Keep going.... the world needs to be educated about this disease. There are many people out there that may not even realize they have it. Diagonised with secondary syptoms,instead of the primary. You go my little one, live your life and educate all of us..Each of us is born with a purpose this is part of yours.... I am so very proud your dignity, diligence, and especially your courage... I am and always will standing right by you to hold you each and every step of the way..
ReplyDeleteMom. XXOO
What a great job you are doing of journaling all of this Stacy. It is very interesting learning all about this disease and your journey through it. Keep up the good work. Jsn
ReplyDeletewell my young friend, I have known you and your family pretty much forever, and never once did I truly realise what you were going through.
ReplyDeleteI talked to your mom and to Leanne and they would keep me updated, you were doing weling...feeling better...but until now I didn't know how extensive, painful and frightening your surgeries were.
Leanne told me about your blog, I will have to send her a note of thanks.
You are an amazing young woman Stacy, your courage and strenght is outstanding. For all you have gone through you still have a sense of humor in your journaling. Keep telling your story, it is so important and the knowledge you are sharing so valuable.
You are an insporation.
with love and freindship
Launa