3/21/11 Big, bad wolf

It's been 2 weeks now since I came home from the hospital and everything had fallen back into place. There is one thing I wish didn't though. I am ashamed to admit that my "ways" have been crawling right back into my mind and by "ways" I mean lack of motivation. I really thought I could easily remind myself of what happened and be able to change for good. I should have known better. This happens every time. My memory totally fades and I have to force myself to remember what happened in order to become motivated again. It reminds me of something mom told me once. That sometimes after you have a baby, (her case), have CF (my case) or go through something hard, you tend to easily forget what that pain felt like. It gets washed away. That's sort of how I feel but I don't want reality to hit me when it's too late. I need to keep focus and not start drifting into lala land. Somehow I have to break out of my old habits. I think I got a good dose of reality today though when I had to wake up at 5:30am this morning to arrive at the hospital just for a PFT test. (Let me point out that I am not nor have I ever been a morning girl which makes these situations very challenging.) Just stepping foot in the hospital lobby was a wake up call. The little voice in my head said, "Hey Jade, remember this? Not so fun was it." yeah it sure scared me good. I have to lock onto that thought when I'm feeling lazy. Why is that so hard?
On a good note, I went up on my PFT test and Dr. Gong was pleased. YAY!!! I decided I wouldn't think any further ahead in the future at that moment and just let myself enjoy the good news for once. It was a long time since I'd heard any from that place. It's funny I always think of the big bad wolf whenever I take the PFT test except I'm blowing down digital candles in the computer system instead of houses...
Anyway, after the visit I decided my body deserved a DD coffee for it's hard work and success. As for right now I am going to try my very hardest to keep the "drive" in me. I'll let you know how that goes. I can do it I know I can! As for right now I'm going to bed to catch up on my...Zzzzzzzzzzzzzzzz

3/8/11 Home Sweet Home

Yesterday morning I was feeling so anxious. It had been exactly 2 weeks of being in the hospital which meant another PFT test. The test that meant if I could go home or have to stay a 3rd week. So much was riding on this and that's all I could think about. I wanted to go home so, so badly but what more could I possibly do to make my numbers go up? The best thing was to somehow stay relaxed because the more tense you are, the harder it is to get all the air out of your lungs. Eventually the time came when she wheeled in the machine and asked if I was ready. I put everything I could into it and then waited for the results. Dr. Gong came in shortly after to give me the news. He said I wasn't up as high as he wanted but that it would be enough to go leave and try to get the rest up at home. I couldn't believe it. I thought for sure I'd be in another week or on home IV's but he said it wouldn't really do much. "We'll have the nurse come in to pull out your picc-line." At first I was sceptical about this choice because I wanted to make sure I absolutely no longer needed IV's before they took it out. It sounds strange but after a while it's hard to let go of something that you know has been helping you. I was nervous to let the picc-line go because it aloud me to receive IV medication without feeling any pain. It's a scary feeling knowing you're on your own now. However, the rash was getting worse and I needed the bandage off! He put me on an asthma treatment as well because I have showed symptoms of it over the years. Not a big surprise, the two can easily go together.
After agreeing to go home we packed up all my stuff and put it in the car. I was so ready to leave and finally feel the sun or even just be outside this building! I was so excited all we were waiting for was a picc nurse to come in and take it out. I looked at the clock, only 10 minutes had gone by but it felt like an hour. Every time a nurse would walk by my door I'd jump up and then realize it wasn't for me. We ended up waiting 3 hours for the picc nurse to come in but now the sun was gone and it was dark. I wasn't complaining though because today I got to go home and waiting 3 hours was nothing compared to 2 weeks. The picc nurses pretty much to it all too so I knew that they were all super busy helping other kids. After it was done we just walked right out. I felt like I was escaping or something and It felt weird to be outside. I was so excited to be going home once I got in the car. I was greeted by dad and Beezer the second I got home and got lots of whistles from Booboo (my guinea pig). When I got to my room I could already feel the bed pulling me in. Both mom and I slept so good that night in our cushy beds. This morning was the best though. I went outside as soon as I could and just soaked up some sun. Then I had some amazing coffee and mom and we got our much deserved makeovers.

A couple months ago I read a story about a man with CF who was in and out of the hospital all the time up until he turned 18. He then started getting into marathons and has done it ever since. He is now in his 50's I believe, and has never been back to the hospital since. If he can do it I sure as hell can too. I just have to work my butt off from here on out but big deal. Before my hospital stay I was never motivated to do any exercise. I'd last a month and quit. I think the hospital was a huge wake up call that I needed. I told myself that I will do ANYTHING in order to stay away from that place and for the first time I actually believe it. I will never forget the visit ever and just to make sure of it I'm making a scrapbook of all the cards I got and artwork the staff had draw for me. I even took a picture of the room before I left to remind me to work hard so I never have to go back. The only thing I loved about being there was the incredible staff of amazing nurses, doctors, PCT's, and RT's. I'd like to say Thank you so much for making my stay a bit easier and making me feel more normal.  And also a HUGE thank you to everyone who sent me things.

I'd also like to add that my blog will still continue because I have more to post and will always have something to tell.

3/4/11 Mr. Moooooo

As you know Mr. Poopy has left but was shortly replaced by a 13 year old girl. I never saw what she looked like but she didn't make even the smallest peep. It was amazing how quiet that night was. Of course it didn't last. Oh no, turns out the girl went home the next morning and a new kid moved in. He too is in  bars. It's like Planet of the Apes over here when the humans were put in cages! But on another note, let me tell you WHY they moved him to isolation. Turns out that he was sharing a room with someone but because he was so loud they had to move him to isolation. So now only the person next to him (aka me) can hear his obnoxious sounds. He make these moaning sounds everyday that are so LOUD. Every night I have to pray he's not awake when I go to bed or I'll never sleep. I can't even spell out the noises that come out of this kids mouth it's the weirdest thing. It's like a "Mooooo" without the M mixed with a "Bahhhhh". I guess I have a farm next door now. There is always someone going in and out of his room all day. He sounds like he has to be heavily watched. They caught him chewing through an electric cord one day and trying to yank out his feeding tube! I'm freaking out a little bit. On top of that I have a baby on the other side that sounds like a squeaky dog toy when it cries. It's a constant reminder I'm in a kids hospital and feel so out of place. The staff is what makes it worth while though. They are amazing and great to talk to. I think I've just been  grumpy from not sleeping. I miss Mr. Poopy more than ever and I'm still counting down the days till my next PFT which will be Monday.
This morning I woke up with a rash starting on my arm though. Oh boy I'm so used to this crap now that it hasn't even fazed me yet. I'm pretty over this entire thing, I don't have the energy anymore to get upset over every little thing. This is the same rash that happened the last time I had a picc line put in 6 months ago. That rash had blistered and spread from my wrist to my shoulder and took a month to heal. It was caused by the bandage. I'm allergic to the adhesive or something. This time we knew what to look for and catch it quick if it were to happen again. Sure enough it did but we were prepared. I put a cream on it today and it started looking better. The bad part is I can only put it on twice a day. I really hope it doesn't get worse I don't know what we'll do. I'll probably need the bandage replaced soon because it's peeling away. The issue with that is my rash will get worse the more it's messed with so I'm trying not to think about it.
Mom bought Burlesque so we watched it last night. It was amazing! The clothes, make-up, dancing, was just what I needed to see. Now I want to get home and get a makeover done. "Oh there's no place like home!" I just want to squish my ducky slippers together and wake up like Dorothy. Does anyone have  Glinda's number by any chance???
Tonight mom drove around and found a Mcdonalds for me today. It was such a nice change I don't know what I would have eaten if she didn't. She got me a coffee too and let me know that there is a Dunkin Donuts 5 minutes away. My dream came true. Maybe it'll help me get my butt up in the morning  Ha!

3/2/11 Bye, Bye Poopy :-(

Well yesterday I got my results back for my PFT's and wasn't real surprised. They went up 10% which is good but a slow start. They warned me it would be a slow start the first week and the next one would hopefully be better. I was happy but of course I wanted more. I still feel great and everyone who comes in tells me I'm the healthiest CF patient they've ever seen so it's frustrating knowing that I still have to be here. I just keep looking at the outcome. I have some very good news but also kind of sad (for me). Mr. Poopy next door who I mentioned in my last post moved out today. I noticed nurses bringing in boxes to his room and an unfamiliar voice inside. It was his mom. It suddenly dawned on me that he was leaving. He had been in the hospital for 37 days and was in the ICU for a while. I never knew why he was here in the first place but he was supposed to go home last week and didn't. You'd never guess he had anything wrong with him he was a wild little man. I will very much miss my little neighbor he made me laugh. Even hearing his loud noises was somehow comforting. When he left he was dressed in a baseball cap and little backpack. He waved to me and said, "Hi!!!" before he was out of sight. I hope he returns to a safe home. I am happy he's out of here yet sad I don't get to see him anymore. I wish I could see where he is in ten years. I wanted to draw a picture for him but they wouldn't allow it. :-(  Right now I'm enjoying moms home cooked spaghetti and fresh pineapple loving every bite. THIS is what food should taste like! I'm so tired of hospital meals. I miss coffee too. Sometimes I daydream about a Caramel Swirl Iced Latte with Whipped Cream from Dunkin Donuts. YUMMY! I received more gifts and cards today (I'll post pictures) I feel so loved thank you everyone. Thanks to everyone sending emails as well it really means a lot.
 - Jade