I'll throw a couple of updates at you:
1. My feeding tube is making a lot of noises. It sounds like its 'tooting'. I actually get amusement from it, along with everyone I show the video to! Maybe I will post it later!! It shouldn't be making this much noise so surgery is supposed to be coming up to see if the size needs to be changed. Oh and it's leaking so there is no use of using it if it just leaks and doesn't help me gain weight!
2. I've been having major port-a-cath problems. With having my port I should be able to receive IV antibiotics, the nurses should be able to draw blood back for labs, and it should be fairly immobile when it comes to laying under my skin. The problem with my port is: no blood return, ever, very mobile that I don't even feel comfortable accessing it myself usually (and I've been accessing myself for 5 years now). I might add that the woman who I only let touch it agrees that I need a new one. But, since the port is still infusing antibiotics, they wont change it. Oh well, it could be a LOT worse and all I want to focus on getting this transplant.
3. There have been a lot of people sharing mine and Daltons story and I appreciate it so so much! I can't even explain the love and support I feel. Dalton and I just want to be together and until my transplant comes, we aren't allowed to be. I hope to continue to get the word out and maybe eventually Dr. Phil, The Today Show, or Ellen Degeneres will call me and tell me how ridiculous the insurance companies are! Ha, kidding aside, I just want fair treatment like everyone else. Thanks to you all sharing though, I have complete faith that my time will come. Besides, I have some of the most awesome guardian angels watching over me that I know things will work out!
Forget me for a second, I have to focus on how AWESOME my husband is doing!!! Today marks Daltons 4 MONTH LUNG TRANSPLANTIVERSARY!!!! We are so thankful to his donor and not a day goes by that we don't give him thanks. I know this time of the month is very hard for a family because it marks the day that a person lost their precious life. Where ever his family is, please know that Dalton is taking precious care of the lungs he received from your loved one! Dalton now has all of his chest tubes out and he might get to leave Pittsburgh soon! He never uses oxygen, his smile lights up a room and he simply looks amazing. He looks better now than when I met him (I didn't know that was even possible)!!
So, in every negative situation, just know that there is a positive aspect you can be looking at. With this negative insurance issue with me, I just look at how well Dalton is doing and how great he looks and it brings tears to my eyes. I thank God every single day for his donor.
Finally, before I started feeling extremely bad, t-shirts were in the works and I was going to get them made through a local person and mail them myself. At this time, we are really tied down without even thinking about the shirt situation so unless I find a decently priced online donor where you can order them online, it will be put on hold. I have a couple of sites I am looking at and if anyone else have any ideas, feel free to speak up! We have our design, we just need an online printer so we don't have to deal with picking them up, shipping them ourselves, etc. Too much stress! So, if you have a site you recommend, let me know!
Finally, before I started feeling extremely bad, t-shirts were in the works and I was going to get them made through a local person and mail them myself. At this time, we are really tied down without even thinking about the shirt situation so unless I find a decently priced online donor where you can order them online, it will be put on hold. I have a couple of sites I am looking at and if anyone else have any ideas, feel free to speak up! We have our design, we just need an online printer so we don't have to deal with picking them up, shipping them ourselves, etc. Too much stress! So, if you have a site you recommend, let me know!
I just wanted to give you all a little update. Thanks for helping me spread the word. I hate bringing this attention to myself honestly, but I really am not done living. I haven't even started yet it feels like on some days. Dalton and I have so many things we want to do and I can't wait until we both take a deep breath in, hand in hand, and set out to tackle the world!!! I love you guys!
-Katie
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Dalton & Katie FaceTime 3/16/2015
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