Dad-1, DVR-0

My dad figured it out. I guess he’s not as old and technologically challenged as I thought.

The Netflix Curse

One thing I have realized in the past few weeks is that I get distracted really easily. And I’m super lazy. But I kinda always knew that I was lazy, so that’s not really surprising. Every morning I wake up and think, “Today, I am going to post on my blog.” Then I proceed to do my morning routine: Bathroom, measurements (Blood pressure, temperature, heart rate, oxygen saturation, weight, blood glucose), medicine, and breakfast. Usually when I eat, I’ll watch Netflix. We all know what happens when you start watching Netflix. It is impossible to stop. I blame Netflix and not my lack of will-power. They only give you about 10 seconds after finishing an episode to decide whether or not to be a productive human being for the day. 10 seconds! That’s how long it takes to make a S’more in the microwave. Let’s all be honest with ourselves and admit that 10 seconds is not enough time to gather up the energy/motivation/will-power required to exit out of Netflix.

So on top of all my clinic and pulmonary rehab appointments, I am burdened with the curse of having a Netflix account. This is the reason that I forget to post until I am laying in bed at night. At that point, I vow that I will post the next day. And thus, the cycle begins again. 

But today, the cycle was broken! Huzzah!! We must celebrate every little victory (especially the fact that I have yet to watch Netflix today, although that’s probably what I’m going to do after this. Shhhh. Don’t tell my dad. He wants me to be “productive”. Whatever that means).

We’ve got some big things going on right now! As you know, we are selling “I know a warrior” T-shirts that you can get online at our website (livewitheverybreath.org) or by contacting me, my mom, Sheena, my dad, or anyone else who might have access to the shirts. They are $20 and the proceeds go to our trust. We will also be selling the shirts at the Work Out of the Day CrossFit Event on March 15th. If you don’t know about that, you can find the details here: https://www.facebook.com/events/473815169395944/?ref_dashboard_filter=upcoming. You should go because I’m also planning on selling cupcakes (homemade by yours truly). You know, unhealthy stuff at a healthy event. Makes sense. One of my closest family friends Gretchen (she’s like a second mom to me) is also doing a little fundraiser that raises money for me and my sister. She is selling heart necklaces that say “With Every Breath” for $20 that can be purchased through my church, St. Peter’s Episcopal in Lake Mary. I would also like to thank Oasis Charter Elementary School in Cape Coral for raising about $600 for my sister and I and the Cystic Fibrosis Foundation. 

 

And now, for some pictures:

 

I think this was one of my first nights at Nemours. I look cute. Especially with that tracking device on my wrist. You know, in case I wander off or try to escape. 

This one is at Nemours too. 

 

This was December 11, around midnight. I’m in an ambulance (fun times) on my way to Florida Hospital. This was the beginning of the Lung Transplant journey. 

First day at Florida Hospital (December 12). This is my baby cousin Boston. Isn’t she adorable? Supposedly, this is one of the few times I was awake and smiling. She kept pulling at my tubes and stuff and the nurse kept scolding her moms for putting her on the bed. So whenever the nurse would walk by someone would quickly scoop her off the bed. Not that I remember this. This is just what I’ve heard. I don’t remember much from before the transplant. Just little random things.

 

P.S. My dad is trying to look up “The Following” on the DVR right now. He is having some trouble though. It has been like 15 minutes. He gets really close, and then somehow exits out of it and has to start over. It’s kind of entertaining.

Me: “Do you need help?”

Him: “NO. I stumble my way through life.”

Me. “Alright…“

 

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. ❤

CF Awareness.

mikaylanicoleblog

I wanted to write a blog all about CF awareness and why I do all the things that I do. First off, I blog, then I vlog. I enjoy doing both of these things. Now, yes, I do have my blog for many reasons, but I do dedicate some of my blogs to CF especially. The other times its to vent and to update people on my current condition..

Anyways. I do these CF awareness blogs and vlogs for many reasons. People may think its for me and so everyone would know my face but that would be wrong. I do it for those who do not have a voice anymore. Who have fought to the death this awful CF and are no longer here to tell the tale of their own story. For those who never got to experience the health that I do, and the free life that…

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Guess who?

So I hear you all have been really needy lately. Well, excuse me. I didn’t realize how much my lack of posting inconvenienced you. Last time I checked I just had a lung transplant. Turns out that make you pretty tired and stuff. I’m also working on improving my strength since I was in bed for like 3 weeks. Supposedly I’m improving quickly and will be able to go home by the end of this week. I just have one chest tube left. Once that’s gone, I’m pretty sure my pain will decrease and I will be much more comfortable.

I want to thank everyone who has supported me and my family during this time. Without all of you, I don’t know where I would be. You all are so incredible. The past few weeks have been a blur. Some things I remember, others I don’t. It’s been really crazy. Not really how I imagined the holiday season to be, but it could have been worse. I will try to post more often. Know that it is nothing against you. I honestly am so grateful to have so many supporters. 

I hope you are all happy now. You can finally stop reading posts by my family members!