Saturday, October 26, 2013

Home

After an hour nap at a rest stop, a red bull (which does give you wings), and 20 deer (one being next to my window in the middle of the road!), Dalton and I got home last night (well, this morning) at 3:30 am!! Thanks for all your prayers and love! We go back for a follow up appointment in 2 weeks. -Katie 

Friday, October 25, 2013

Feeding Tube

I got my long feeding tube changed to a mini button! I am so happy right now about it!!!

Thursday, October 24, 2013

The Real of Realization

So, I am starting on my third week here at the hospital and things have changed. This is not a sympathy post but just something I have wanted to get off my mind and what better place than the blog!?
Since my birth and through high school, my health was fairly decent. I went into the hospital max 3-4 times a year. I never let CF stand in my way of anything I wanted to do. Since I was little I have played sports, went out, hung out with friends, and believe me, done the crazy things every parent doesn't want to think their teenager is doing! In the past few years, things have been difficult. I can't keep count of how many times I just wanted to get up and run, like I did when I was in high school. My life has been spiraling downward and for the first time in literally forever, I feel like I barely have a grip on what is going on with my body and honestly it is not a good feeling. This year has been the worst of them all..
It all started when we began the journey of going through doctors and finally landing in the best hospital with the best care at University of Pittsburgh (UPMC). I cannot say anything but the best about the team that takes care of us. Our dr. in Cincinnati referred us both for lung transplants to UPMC. I can safely say that those 3 days of transplant evaluation were the toughest and longest of my life. I started having to wear oxygen in March and thus came the vulnerability that I wasn't used to. I have officially been in the hospital or on IVs more times this year than I have not. This year my body has been breaking and transforming into something so that I can continue to survive. With each admission, I break a little more and my body becomes a little more ready for transplant.
If you think about it, for someone who has been living so poorly that they would just want to go, go, go, get the transplant and start their life.. But me, my body is saying one thing and my mind is definitely saying another. My body is yelling at me to 'help, please I can't take this one more day' but my mind is saying 'you're still kicking ass, you don't need a transplant right now'. I tend to lean towards my minds thoughts more than my bodies feelings and I have always been this way.
In the past 3 weeks I think I have began preparing myself mentally and emotionally and my physical health is ready. In my mind I am still being cautious and making sure it is the right time. I am currently not on the transplant list right now because I have to do a couple more things for insurance.  Although I am sick, and in the worst possible health I have ever been, I am slightly putting those things off to make sure I am ready. I keep fighting with myself and no matter what anyone says to me, whether it be opinions on what I should do, or what I shouldn't do, I don't take what they have to say into consideration.
Over the last few days, I have realized what it means to be sick. All the other times in my life, I have taken a couple of weeks of IVs and then jumped right back. I didn't jump back this time. In fact, I am still sitting on the floor because my knees keep giving out. The IVs I feel haven't worked very good.
Over the last few days, I have also realized how important a positive attitude is and how important laughter is, how important friendships are, and how quickly your body can take a turn for the worse. The only thing I want to do is keep laughing a lot, keep my positive attitude that I have had all of my life and trust me, if I haven't lost it by now, I never will, and see my friends that feel like family who I used to have but no longer come around.
When I finally realize what needs to be done, I'll do it. For now, I am just going to continue with the punches.
-Katie

(I might update more later on but for now this is it)

Wednesday, October 23, 2013

2 Weeks

 
Today is officially the end of the second week of us being here in the hospital in Pittsburgh. Things have been somewhat challenging and we haven't had the best two weeks. But hopefully in the next few days we will be getting to go home. Some new things have happened..
1. We both have to wear our bipaps at home because of our high CO2 levels.
2. Instead of having to carry around big tanks, we are going to get to go home with liquid oxygen which will be way easier to carry and can even be carried in a little backpack.
3. Katie gets her feeding tube switched out for a mickey button which is way smaller and much easier to take care of.
All in all, it has been a crazy past two weeks and we really hope we get to come home soon. We also have a unspoken prayer request so please pray that the Lord guides us to make the best decisions.
-Dalton and Katie

Friday, October 4, 2013

Pitt Bound

Welp, it is time for our monthly appointments in Pittsburgh next Wednesday so we will be going up on Tuesday. I really hate the drive because it is boring! Nothing to look at until you get to the Pittsburgh bridge! Dalton and I have both been on several weeks of IV antibiotics. I just want a break from them! Oh and an update on being on the transplant list.. Dalton isn't on right now because he is still waiting to get his stitches out and I am not on it right now because I have to get a test done but we will be on again. I will update again after our appointments.. -Katie