I'm young. 18 years old to be exact, but my heart and mind say otherwise.
At a younger age I was never able to understand most things that were brought upon my life. I was constantly facing new struggles that kids I was surrounded by weren’t dealing with and may never have to. I grew up surrounded by medical terms, doctors, and hospitalizations. I became familiar with medication lists so long that they consumed 3 full pages.
My whole life I have been raised through challenges, broken dreams, and learning to adapt to new lifestyles time and time again. As I began to get older and wiser I learned to accept my fate in life, I learned to face difficulties with nothing but a positive outlook, and I learned that there is no way to change your past, but there are ways to make your present and future worthwhile.
There have been times where I was not able to keep my vigorous frame of mind. In these moments I would feel myself slowly drowning in sorrow, defeat, but most of all, guilt. I felt guilty because, even though I may not have been in the best situation, I was far better off than some people in this world. These are the moments that have helped define who I am. People will hear my infectious laugh during my most difficult intervals, I will have an everlasting smile on my face when all I want to do is break down, and no matter what is going on in my life, I am always putting forth the effort into making others happy.
For me to be able to say that I am satisfied with myself, life, and all of its entities is a wondrous feeling and gift. Every day I fight the odds and live with a mad, passionate determination, which no matter what, will never be destroyed.
I’m young. 18 years old to be exact, but my heart and mind say otherwise.

Friday, August 24, 2012

Keeping my fingers crossed.

Well, I'm home!

Last Monday I redid PFT's and they were unfortunately only 40%, which means they only went up 2% in a week. Which is better than no improvement at all, but usually after even a week and a half of being admitted my PFT's go up to about 8-10% in a week and are around 48-50% when I leave. We had already planned on me going home Tuesday. I am feeling A LOT better than when I was admitted, but I'm still kind of weary about the fact that my numbers are the lowest I've ever left the hospital with. I'm currently on home I.V.'s and am going to the clinic on the 27th, which is also my first day of classes! I'm incredibly nervous to see what my PFT numbers will be on Monday...keeping my fingers crossed.
Oooh, and I also got to discharge myself for the first time! Whoop whoop!!

A few months ago I had watched a youtube video of a girl, Lindsey Sterling, playing violin and I instantly became addicted to her. Now, I have always been a fan of violins and have wanted one for the longest time. After watching more and more of her videos I became more inspired to finally get one and start playing. I had showed one of my best friends, Nick, and my brother the youtube video and they became hooked as well. Now, whenever we are all three in a car together we are ALWAYS playing her songs. Nick told me when I first got admitted that he had a surprise for me but had wanted to wait to tell me in person and he finally got that opportunity today. Turns out that he got tickets for me, him, and my brother to go watch Lindsey Sterling in Chicago on October 6th!!! I can't even express how excited I am! It's on a Saturday so we are planning on going up Friday and getting a hotel overnight so we don't have to get up super early..well, mainly for the benefit of my health. I am praying, praying, prraayyiinngg that I can keep up good health and don't end up getting sick right before. It seems like it's that way for everything. I got sick right before this past Christmas, graduation, my birthday for the past 3 years, the ending and beginning of my senior year and so many other important days that I had to be sick on.


Anyway, here's a link to a video of the amazing, Lindsey Sterling.


Wednesday, August 15, 2012

5 senses of hospitalizations.

I smell the strong antiseptic upon entering the building as it burns my nose.
Chlorascrub swabs ring flashbacks of numerous procedures as I'm being scrubbed to diminish any form of bacteria.
After the toxic I.V. antibiotics settle into my body there's a familiar scent caused by them that overcomes everything- My breath, skin, clothes, and especially the air that circulates around me.

I taste the blandness that the medications have caused.
During every infusion of antibiotics, saline, and heparin there is a cold bitterness that succumbs to the back of my mouth.
Ice water slides down my throat as I wash down the numerous pills that all engage in some form of aid for my frail, pathetic body.

I feel flashes of heat along with beads of perspiration in my below 60 degree room while the toxins run through my veins.
Multiple pricks of sharp needles on a daily basis have allowed me to become accustomed to the feeling- no more fear, no more flinches, no more pain.
I am confined by tubing that in the end, is my answer for better health- Oxygen, nebulizers, IV machines, and feeding pumps.

I hear the laughs, cries, muffles, disappointment, and excitement of many forms of people in the halls as I lay in my closed off, isolated room.
In any instant the beeping from my IV pump will set off ringing in my ears while I wait for proper assistance.
"Get better," "I'm sorry," and "How do you feel?" are bittersweet gestures that bring an unwanted cringe.

I see the plain white that validates most objects- Walls, floors, blankets, lab coats, cups.
Concerned looks amongst family, friends, nurses, respiratory therapists, and doctors send a signal of weariness and sorrow.
Young, innocent lives are painfully being destroyed by sickness and you see the results as kids walk around halls with IV poles, oxygen, and masks.

Monday, August 13, 2012

An incredible difference!

A week after being admitted and I feel an INCREDIBLE difference. 
I did PFT's (lung functions) earlier and they were 38%!! That's 20% higher than what they were a week ago. I also haven't needed to use oxygen in over 24 hours. 

Here's a list of what has been going on.
Thursday, August 9: My doctor was listening to my lungs and said something sounded wrong so he did an X-ray and it showed that my lower right lobe had collapsed. We started doing manual CPT on top of my treatments four times a day so I was getting airway clearance every 2 hours. My doctor also wanted me to start walking around more. I was able to do two laps around the Peds unit (with oxygen.)

Friday, August 10: My best friend Kayla came up and I was able to walk all the way down to the cafeteria  (with oxygen) without feeling to worn down. Oxygen levels were improving and I was running at about 94%/95% with oxygen. My mom came up to stay for the weekend. Weight: 103. 

Saturday, August 11: I got another X-ray and it showed that my lower lobe had improved and was starting to re-inflate itself. I was able to take off my oxygen for a couple hours at a time. 

Sunday, August 12: I was able to leave the hospital for a couple hours (without oxygen!) and went to lunch with my mom. When I got back my O2 levels were good and I haven't needed oxygen since..even overnight. Weight was still 103. 

Monday, August 13: PFT's were 38%! No oxygen all day. Stopped doing manual CPT and am now back to doing just my vest four times a day Me and my doctor are going to talk tomorrow about when I am able to go home.
So overall, I am doing A LOT better. My weight still needs improvement, but I can deal with that. 

Here's some pictures I took while being bored..
Till next time. 

Tuesday, August 7, 2012

Pulmonary Function Test's

I just did PFTs (lung functions) and they're 18%
I'm exhausted.
I can't breathe.
I'm in pain.
I have a fever.
I need sleep.

Monday, August 6, 2012

"Quick" update.

Going to do a very "quick" update. 

First things first..
My birthday! 
I did it. I made it to the day that doctors say I am lucky to have reached...my 18th birthday! I spent the whole day with my family and two of my best friends, Kayla and Nick. I woke up to purple streamers and balloons covering my doorway. For my birthday dinner I chose homemade chicken quesadillas, loaded mashed potatoes, and homemade vanilla pudding :). One of my good friends Alex, who is an amaazzingg CF supporter, stopped by my house with a homemade pumpkin pie (my favorite!) and hot chocolate. I got A LOT of candy and ended the day with watching movies with everyone.

I went on my Make-A-Wish shopping spree this weekend. The limo driver picked us up at around 8:50 AM. Our first stop was Elderly Instruments where I got my violin! I have been wanting a violin for a lonnggg time. I got one with a reddish tone and the inside of my case is purple..my two favorite colors! I am set up to start lessons soon. Holding the violin in my hands sent such an amazing feeling through my body :). We then went to Barnes & Noble where they surprised me with a bag filled with goodies such as notebooks, a water bottle, bookmarks, a mini John Lennon figurine, anddd some other things I can't remember at the moment. I picked out about 10 books. Next stop; Best Buy. I got my beautiful MacBook Pro along with a light blue case and keyboard case, new headphones, and an Ihome. After Best Buy we went and had an amazing lunch at Logan's. I didn't really eat much because I wasn't feeling that well, but the food was to die for! We then went to TJ Maxx. They built a huge archway of purple and red balloons and had a sign that said "TJ Maxx welcomes Alexandra." They then wheeled up a Nike black and pink bag that had a card and gift card. One of the workers came up to me and said, "If you're really feeling up to shopping, you might want to look at the gift card," so I opened it and it said $500! I was literally speechless. Each of my family members received $30 gift cards also. They gave me a personal shopper to help me get things that I needed. I ended up getting two jackets, a long sleeve shirt, a purple suitcase, socks, and an amazingly soft purple blanket. I probably would've got more, but I was beyond exhausted. After checking out me and my family said goodbye to all of TJ Maxx employees and gave enormous hugs to Katrina and Ginny, who are the MAW volunteers that made this all possible. They were both incredible and have such amazing hearts. I give MANY kudos to them. 

Last, but not least...my health.
About a week and a half ago I started wheezing, which then led to coughing a lot, which theeenn led to a lot of other problems. I began having troubles breathing which rapidly became worse. After a couple days my breathing was so bad that I had become breathless from taking less than 20 steps. My mom called my clinic this morning and they allowed me to come in early. My weight had dropped from 108 to 103 anddd my lung functions were at 20%. There was more than a 15% decrease in a matter of two weeks. My o2 was about 89%, which isn't the worst that it has been...we'll see how tonight goes. I had packed everything because I knew that I'd be getting admitted. I'm in the PICU right now, but I should be getting moved out in about a day or two. Having oxygen and taking pain medications has already helped a tremendous amount. I was able to lay down and take a quick nap, but got woken up for X-rays. I am doing PFT's (lung functions) again tomorrow. 

Ok well, I think that's about it. I'm sorry if I wasn't very detailed and whatnot..I'm extremely tired and have gotten exhausted from typing. My train of thought is a little foggy because of the pain medications. 
But for now, here's some pictures. :)
Take Care. 

Some pictures from my birthday. The rest are on my other computer.

Pictures from Make-A-Wish that I have..there's many more. 

Anddd this is me right now.