I just really wanted to use the word ‘hullabaloo’

Well, hello, people of the internet! It has been a few months so I figured I would get you all caught up on what has been happening since my last post!

As you may remember (though you may not because it was a few months ago and I realize that the world does not revolve around me, and therefore it is not a requirement that you remember every detail about my life. However, if you do happen to remember every detail of my life, I’m really not that great. I’m not saying that you need new priorities… but you need new priorities.) I got my feeding tube taken out after 10 years! It now looks like I have two belly buttons, so yes, I am an alien. It will eventually close up, but since it had been such a long time, it may take a while. I also had my I.V. Port removed from my chest. So now the only foreign objects in my body are my lungs!

I start at UCF in a few days, which I am very excited for. I’ve missed school. I miss seeing people who are not my family or coworkers. I mean, seriously. Those Bonefish people get annoying after a while. It’s always, “Jordan, can you give me more tables” “Jordan, can you run this to a table for me?” “Jordan, I love your necklace and I’m going to rip it off of your neck” But I really do love my BFG family. Well, except for Meghan. She is too much to handle and I can’t imagine what her ACTUAL family goes through.

Now for the main reason I wrote today: I got a tattoo! Some of you are probably like, “Yay? It’s just a tattoo.” Well, you can leave then. I almost got a tattoo last November when two of my amazing best friends got “with every breath” tattooed on their beautiful bodies. I wanted to, but was unsure of how that would affect possible transplant. I made the right decision at the time, because less than a month later, I was on life support and waiting for lung to become available. Remember that? Ah, fun times.

Well after all that hullabaloo, I wanted to get a tattoo so that I would always be reminded of what I had been through (not that I could really forget, but whatever). However, I was worried that I wouldn’t be able to get one because of the risk of infection and the immunosuppressants that I am on. So I felt like I had been screwed over and that life wasn’t fair because I wanted a tattoo and I couldn’t get one because I had been SO INCONVENIENCED by the double lung transplant that saved my life. Well that pity party lasted all of .5 seconds because, let’s face it, I dislike people who look a gift horse in the mouth and take what they have for granted. Like all my ancestors before me, I did what they all did when they needed guidance and answers to life’s great inquiries: I Googled.

Through my research (I actually only read one forum so I don’t think it counts as research) I found out that others who had received transplants had been given the green light by their doctor. So when Dr. Pelaez said yes, I burst in to tears because that just seems to be my natural response to everything. Robin Williams passes away? Tears. Groot sacrifices himself for the rest of the Guardians? Tears. The WiFi doesn’t work? Tears. You get the picture.

I then drew out what I wanted because I’m a control freak. I wanted my best friends to be there because they came up with the original idea. But I had to wait for Moriah to get back from Gainseville because for some reason I can’t figure out, she actually likes going to UF and doesn’t want to transfer to UCF and spend all her time with me. Weirdo. Moriah finally arrives home from the land of alligators and we went and got my tattoo yesterday! It didn’t really hurt and only took about 30 minutes or so. It turned out perfect and I couldn’t be happier for it. I think you might be able to see my second belly button in some of these pictures. You’re welcome.

 

 

The final product:

 

 

We then went back to Moriah’s house where Sarah used her AMAZING henna skills.

 

So that’s about it. You are all caught up.

A [New] Beginning

I know, I know. I’m sorryyyy. I’ve been a really bad blogger. You’re all probably like, “Where she at? Why she gotta leave us hangin’?” On the bright side, I have tons to post about now. If I were following me (which I’m not, because that would be weird), I would get excited because there are tons of pictures coming and stories and stuff. 

Let us begin at the beginning. The beginning is generally where you begin. Crazy concept, right? My adventure into the real world started on Friday, January 10th when my father, Sheena and I broke out of the hospital. We pulled a Shawshank, escaping through the hospital’s sewer system via a hole I had dug into my hospital room wall, which I kept hidden behind two pictures that had been colored by Riley and Peyton (Shana, thank you so much for all the love! Tell the girls that the pictures made me so happy! Definitely made the room less depressing! 😀 ) Yeah, so that’s not necessarily how it happened. We did wait around all day for them to officially release me, though. Basically, all these people had to sign off, they had to remove my picc-line, and all this other stuff. It took forever and we were all really impatient. I mean, we were on week 4. Cabin fever was heating up. At about 5:00, they finally gave me the green light to ride off into the sunset on my golden chariot, a.k.a super-uncomfortable wheelchair. We took a slight detour to visit the CVICU (Cardiovascular Intensive Care Unit, in case you forgot) to say thank you and show off my awesome walking skills and give them an idea of what I look like without having a thousand tubes in me. 

 

I was wheeled into Nemours Children’s Hospital on December 8, 2013. I was then brought in on a stretcher to Florida Hospital South on Wednesday/Thursday December 11/12, 2013. On January 10, 2014,  after Christmas, New Year’s, and my birthday, 13 days on ECMO, a double lung-transplant, 3 seizures, a thoracentesis, 4 chest tubes, a trach (twice), a picc-line, a new (and ugly) feeding tube, 5 Arterial lines, 4 central lines (two in my neck and two in my groin), too many staples and sutures to count, I walked out of the hospital. 

 

Oh, if you didn’t know, you can purchase your own version of this shirt [It says “I know a warrior. Organ donation saved her life” instead of “I am a warrior. Organ donation saved my life”] All the details are on our website at http://www.livewitheverybreath.org. 

 

I want every single person reading this to know how much I truly appreciate you. I don’t think you really understand how amazing I think you all are. When I first saw how much support and love I was receiving, I couldn’t believe it. I knew that I was loved, but I didn’t realize the extent to which that love reached. People I had never met or even spoken to or even heard of were thinking of me. It was (and is still) surreal. I want to thank you all, from the bottom of my heart. I don’t think that this journey would have been as successful without you and your thoughts, prayers, and love. So again, Thank you. ❤

Up in the Air

One of the worst things about hospital stays is the unknowing. You don’t know when you’re going to get out. It’s all just tentative. There are so many factors that it depends on. And some factors depend on others. It’s like those “Choose Your Path” books. “To fight the troll, go to page 15. To go back to the crossroads, go to page 10. To curl up in the fetal position and just cry, go to page 50.” Stetson has called me like 3 times asking if I know when I’m returning. I’m all “I don’t know.”, and I hear them kind of sigh and say “Okay. Hope you feel better”. I’m glad they care and everything, but seriously. Stop calling every couple days, especially when I told you I’d be gone at least 2 weeks.

Anywho… the doctors want us to transfer to Shands to start the evaluation. They are trying to speed up the process of the transplant because they think we are really good candidates. It’s actually kind of ironic. You have to be sick enough to qualify for new lungs, but not too sick that your body won’t be able to handle the surgery. Its this little, tiny, itsy-bitsy range that we happened to fall into. So they want to expedite the process so we don’t fall out of this range. Ideally, they want us to go to Gainesville by this weekend. But they are still waiting on final word from Shands. They say we will know for sure by tomorrow, but they’ve said things like that before. So right now we don’t know if we will be going to Gainesville. But the doctor still thinks that we will not be officially “free” for a week. So we transfer to Gainesville and they evaluate us through to next week, or we don’t go to Gainesville and are in here through to next week. Fun times.

Good news though! My pneumothoraces are gone! X-ray from yesterday showed that they have basically disappeared. Holding off on chest therapies for a couple more days just to play it safe, but its a good sign. 😀

Oh, and school is completely up in the air right now. That is a topic for a whole other blog post and I will explain when I know some more details and get some questions answered. It’s like a cliff hanger. 😉