GOING NUTS

SO I had my barium swallow test done today...at 2 pm. Turns out I have reflux! I knew this already but we needed proof and the paperwork for it. The barium was atrocious. Definitely almost threw up on the equipment, lol. I also found out that the culprit of my nausea is due to my stomach not working properly at all. It doesn't really contract to push my food down to digest it. So my food just sits and I get nauseated. There's a medicine that is not fda approved that I will start taking to help correct this problem. It's similar to reglan, but not as hard on the patient. It's called domperidone. You can get it in Canada and it's relatively cheap. I can't wait to be able to eat and keep all my food down. I swear cf affects everything. Absolutely. When I got back to my room Ron told me he had to leave to get ready for some stuff at home. I just realized I can't stay any longer this time. I just can't. I'm going crazy. I talked to the docs and they told me if I'm not on the schedule for g-j tube placement tomorrow, they'll let me go. Pray!!! My last IV med is at 6 pm tonight...but when you're on here, they make you keep IV access for the duration. So, I'll still have my needle. Gosh I'm sick of this bed, this room, these interruptions....the list goes on and on. I need my Miracle. NOW. I miss her so much. I know she misses me too. She has to have some sort of feelings going on and be confused about where I keep disappearing to. Being only 2, that's tough. For now, the lovely Trish and my redneck Shane are on the way. I feel like the bestie has slipped away from me. College and all that. Super glad she's having fun and enjoying her experience so far but I feel a little down. Oh well. She knows I love her. She has a wonderful head on her shoulders and I know she is her own woman. I'll update later if something changes. Love you all.

Lifted High

Another day in the hospital! I was told that I couldn't eat or drink anything after 12 am last night for a liquid gastric emptying "sometime" today. LOL. That sounds promising right? So I was wheeled down there and swallowed nuclear apple juice and got scanned after 1 minute, 5 minutes, 15 minutes, 30 minutes, 1 hour, and 1 hour and a half. Whew. Definitely not invasive but sort of time consuming. I saw the dr. today and he's still singing the same tune. Not really wanting to place another g-j tube. Grrrr. We'll see what the test says. Oh yeah, after I'm down there the tech tells me the longest I should have to go without eating or drinking is 4 hours. Hahaha. Good stuff. I went about 12. Tomorrow morning I'll do the solid gastric emptying which is done with nuclear eggs. Exciting indeed! Ron's good friend Tommy is doing an event for me at the LongBranch on September 5th. I'm definitely going just to mainly be there because it's being done for me. I'll probably speak on stage after all the excitement. Should be a fun time. Weird with no drinking but it's not good for me anyway. Yesterday was kind of a down day. I ate a marvelous breakfast (eggs, potatoes, cheese biscuits, AND tomato gravy) only to throw it up later in the day. I felt defeated and trapped in this room. I wouldn't take calls or text people back. I'm lots better today though. Smiles and all! Just had a wonderful conversation with the social worker. He's pretty chill. My doc informed me today that I'll get one more day of IV's then I'm off until the next flair up!! Hopefully it will be longer this time. Now if we could just figure out the tube issue, we'd be golden. Mostly, I just want to be home. My feeding tube is no longer giving me pain and I'm willing to go through another placement. I think my dad is trying to visit tonight :) I'll keep updating as news is available. Also, I'm posting a picture of my super heroes that are fundraising for me. Love you all.


My team of Super Heroes!!!

My Ring

My ring! Trust me, this picture does not do it justice. It's not a diamond due to the fact that I don't like being average or ordinary. I specifically told him early on that I don't dig diamonds. The band looks almost like a crown, which is perfect because he calls me his Queen. Man, I love him. I must say, he did very well. Thanks to the girls who helped as well: Danielle and Kat. I love you guys!! I'll try to get the proposal video up here somehow.

New news.

Welp, turns out the infection my dr. thought I had...wasn't an infection at all. It was actually intussusception. That is the telescoping of one segment of intestine into another. Yep. So they decided to pull out the g-j tube and replace it with just a g tube. Upon putting in the new g tube they flushed it with contrast to see if by pulling out the old one it had pulled the intestine back to the way it should be. Today I got the news that my intestine is good. Started me out on a liquid diet yesterday and I've moved on to full liquid today. Tomorrow I've heard I can go back to a regular diet, which is awesome....because ya girl is HUNGRY!! Other things to discuss: my dr. is not liking that I'm struggling so much already with another lung flair up and the tube issue. This is my 3rd feeding tube. He feels we just need to get the ball rolling asap on transplant. I guess he's trying to convince the transplant team to move forward with me anyway. Pretty scary stuff. See, transplant wants me to have a g-j tube. It's better because the j tube goes directly into my intestine while the g tube goes to just my stomach. So now I have a g tube, meaning the possibility of severe reflux and aspiration are likely. The dr. is setting up a gastric emptying study for me to see how my reflux does and see how my tummy empties. This will determine whether they even want to try doing tube feeds with the g tube. I already deal with lots of reflux so I feel the g tube is not a good idea. If I do require another g-j tube, the surgical team will be performing the procedure. Gah. So.....I'm a fiance now!! My marvelous bf Ron popped the question the night before I was set to come into the hospital. Took me by total surprise. He's such an amazing person. I thank God everyday for sending him my way. I didn't know love could be this wonderful. I feel like he loves me unconditionally, which is typically saved for moms and dads ya know? I pray the Lord stays strong in our relationship and stays with him for the tough road ahead. I know it isn't easy. I had visits from my mom, cousin Traci, and her mom Sissey today. It's been slow but that's better than being poked and prodded! My bestie is going off to college on Sunday :( I won't be there to see her off and I wish I could see her over the weekend before she goes. Goodness....I'm tearing up already. That girl has been such a rock for me. She is truly the best friend I've ever had. Such a big heart and just as silly as I am. I love her smart-assness (yep, you see it) too. She's just incredible. I love you Danielle and I know you will do amazing at college. Everyday you make me proud. I'm out for now. Love to all.

EXHAUSTED

Wow. Yesterday was indeed a long day. Got to Duke around 9:30 am and left about 6 pm. I am NEVER agreeing to that many appts in one day again! The 10:15 am bone density scan went fine, although I don't know the results yet. After that, it was the "What to Expect With Transplant" class with my mom at 11:30 am. Very informative and I'm super happy they have these classes for us. It was an extremely tiny room and all of us in there were pre-transplant. Most of them had their lovely o2 in haul and you could hear the whistling from the air and them breathing in and out. Then came the coughs. All of us are so used to it we all just sat and acted as if nothing was going on....because to us, nothing IS going on. How wonderful it was to cough and clear our throats with no worry of people glaring like we have some contagious disease and without hearing "Are you ok??". I know some people mean well and we definitely sound awful when we get way into the deep coughing, but it does annoy us sometimes. I felt so at home. These people know me without ever speaking a word. So comforting. Next, it was on to the cf appt. I was given a chest x-ray which I'm assuming is the same as always, bad, lol. The dr. had a serious conversation with me about how I LOOK very healthy in person but on paper, I'm really sick. Getting out of breath really bad again, can't seem to stay off of IV's. Bottom line, I HAVE to gain this weight and complete rehab. Transplant is a huge necessity right now but I can't move forward until the weight gain and the rehab. A little added stress but what's a little more, right? Also, I addressed the severe pain I STILL have over a week after the feeding tube incident. He determined it's cellulitis, an infection. Jeepers! So he started me on an antibiotic and told me if it doesn't seem to be getting better by the close of the weekend, I will be admitted. So let's all pray it gets better. Did a little walking to assess my ability to keep my sats up. I did pretty well. Whew....still had one more appt with the transplant doc. So we headed over to Duke South. Btw....the hallway to get there from the parking garage is HELLA long. I decided against a wheelchair on the way in and definitely was singing a different tune on the way out! We were wating forever and to pass the time they decided to draw some blood and attempt to get a blood gas. Blood gas was a bust and extremely painful. Thankfully, the RT isn't into torture and since she didn't get it the first try, she let me off the hook :) I was scheduled for yet another x-ray and another breathing test, but since I had JUST had those, I got to skip it. It's the little things. Finally, the dr. was ready for me. He pretty much reiterated what my lung doc said about it being crucial to gain the weight and finishing rehab. So....those are my goals. Today all I did was rest. I was so worn out from yesterday. I have to ready for this weekend! LOTS to do and man am I excited! Photoshoot with the best, shopping more than once tomorrow (HECK YESSS!!!), and Sunday is the fundraising meeting and then girl's day with the best and the rents!! How fun :) That's all for right now. Love to everyone!!!

My Life

Just wanted to post a new picture of my babygirl, Miracle Jade. She makes it all worth it. My main reason to continue this journey and fight so hard. It's all for you baby.

Back to happy April?

So, I've had a rough couple of days. Just been kind of down lately because I wish I was ready for transplant. Even though it's scary the waiting really sucks. I had Mira for a night and just realized I'm still not healthy enough to keep her full time. I had to ask her daddy to continue keeping her. He of course had no problems with it...he's been great through out this entire thing so far. She got into daycare and we decided he will drop her off with me in the mornings and I will be the one to take her back and forth to daycare. This way, she can still spend some time with me. Not my ideal situation but better than not seeing her at all. She's just incredible. She's been singing and just being the big personality she's always been. Ron got a video of me picking her up from her first full day at daycare. I'll try to post it later :) Yesterday Ron and I went on the hunt for a couch. We found one we both really like so I guess he'll be getting it sometime soon. Then on to an area rug, a floor lamp, and other decorations!! Can you tell I'm excited? Gosh, I'm such a grown-up. LOL. I was in quite a bit of pain last night and this morning. Somehow managed to have an upset stomach as well today so that was no fun. Now it's approaching nighttime and I'm waiting on a visit from my dad. He visits more lately. Tomorrow= BUSY day. Three appt in Durham. CRAZZZYYYY!!! I'll be with my mom the whole time though which is a relief. I really don't know what I'd do without her. The madness doesn't stop there. Tax free weekend which means (DUH), I'm going to SHOP, Sat I have a photoshoot with the best, Sun we have the fundraising meeting then after that the girls are getting mani/pedis. Fun filled weekend. Can't wait! I'll be posting pics.