Tubes and Such

Whew. So I HAD my little Mira back for a couple of days....then my feeding tube became clogged and I had to go get it switched out. Back to daddy's she went. She'll be back on Monday though :) I managed to get her into a really great daycare with the help of the bestest, Danielle. I know she'll just love it! I can't wait. Last week I went to my first initial meeting for pulmonary rehab. That place is HUGE and it's like an icebox in there! Starting up at the beginning of August. Possibly in one more week. Twenty three whole sessions. Hope I'm ready for the intense workouts and class time. My mom got the "Help April Breathe Easy" shirts. Very excited about that. OH...did I mention that I got my tube replaced on my bf's bday?? What a great gift right? Geez. Stupid cf!! LOL. I found out my daughter is quite the Usher fan. She definitely sings along to "There Goes My Baby" and "OMG". It's the cutest thing ever. Ron got some video of it. Danielle and I went shopping a little today for the photoshoot we have coming up next Saturday. So stoked about it. My stomach started hurting mid-way so we left a little earlier than I intended, but we came home and watched Sex Drive....which by the way....is absolutely HILARIOUS!! I recommend it to anyone that loves to laugh. The bf and I watched Flatliners last night....I love that movie; been way too long since I've seen it. Ron was a Flatliners virgin, so I got to break him in. It was a good night. Waiting on the best cousin ever currently....she's bringing Mexican and a movie...doesn't get much better than that right? Then the rest of the night will be with the lover. Man, good day!! Tomorrow I'm meeting up with momma to get the shirts and help distribute some of them. Our first fundraiser is coming up! This is so exciting! I noticed today as I was walking through the mall with Danielle that I was struggling a little. I guess the transplant really isn't that far away. Scary thought. It is what it is though. Just need to keep doing everything I can to stay healthy and complete the rehab asap. Last night my dad and I went to grab some Cook-Out....man it was yummy. I cherish the little time I spend with him. He goes through so much and deserves to have everything he wants. It's been a long time since I've been "daddy's little girl" but he's incredible. He's really been doing his best to be here a lot more and call and such. Makes me feel wonderful. I love my family. And always my friends. How blessed I am. Wonder what other things await me tomorrow?

HOME!

Well, I'm home now. I've had a lot of pain from the feeding tube and somehow managed to make it through an entire day of puking about 2 days ago. It wasn't as painful as I thought it would be. What IS painful however, is coughing. Whew, now that HURTS. LOL. Yesterday was just a very lazy day for me. Today I got my car back (YAYYY)....meaning I could listen to my music :) Went to visit my mom at my gma's house, went to Kmart with my dad, and washed some dishes. Oh...and visited the best cousin in the world to get fitted for diabetic shoes. Did I forget to mention I'm diabetic now? Another one for the list. Last night I had really bad reflux and woke up throwing up a little. Not cool. Apparently, I wasn't elevated enough. Solved that problem really quickly though. I hope the reflux isn't that bad tonight. I get to see my Miracle on Saturday AND Traci's BBQ bash is on Saturday also! Fun times indeed. Pics will def follow. Seeing Katy for the 1st time in a while tomorrow. Sure to be slightly awkward. See, she was the best for a long time and then I got really sick and I don't know what happened. She kind of went AWOL. We'll see how that goes. The bf is working late tonight so I'm all alone :( Oh well, it's healthy to be alone sometimes. Love to all!!

Tube Update

So, all went well with the feeding tube. I'm sore but went for a walk earlier and am adjusting to having another tube hanging out of my body, lol. My mom and boyfriend were here to see me off when they wheeled me down and were here when I woke up as well. That's a great feeling. As I was sitting on the table waiting for the meds to make my eyes close, I handed it all over to God. Completely and utterly just let go. He took care of me and was working through the docs. Ron prayed with me twice and that is such a comfort to me I can't even describe it. I feel so incredibly at ease when he holds me in his arms and asks that our Savior do the same. I'm tolerating my tube feeds really well and am more than likely going home tomorrow!! That's exciting. 3 weeks here and I am definitely ready to leave. No oxygen and only needed on extreme exertion. What a difference. Thank you to all those who have and still are praying for me. I love you all. Can't wait to leave and get something super yummy to eat and see my daughter ANNND sleep in MY bed!!!

Natalie Grant

"Will Not Be Moved"

I have been the wayward child
I have acted out
I have questioned Sovereignty
And had my share of doubt
And though sometimes my prayers feel like
They're bouncing off the sky
The hand I hold won't let me go
And is the reason why...

[Chorus:]
I will stumble
I will fall down
But I will not be moved
I will make mistakes
I will face heartache
But I will not be moved
On Christ the Solid Rock I stand
All other ground is sinking sand
I will not be moved

Bitterness has plagued my heart
Many times before
My life has been like broken glass
And I have kept the score
Of all my shattered dreams and though it seemed
That I was far too gone
My brokenness helped me to see
It's grace I'm standing on

[Chorus]

And the chaos in my life
Has been a badge I've worn
Though I have been torn
I will not be moved

[Chorus]




My bestest introduced me to this artist. Thank you friend. I love you and couldn't have been blessed with a better person to share everything with <3

Tomorrow is G DAY!

Hello all. Yesterday was extremely long but I got to spend it with my boyfriend so it's all good. I went walking around Duke a bit and sat outside for quite a while. My best friend Jon came and visited with Whitney...who gave me an awesome lucky turtle charm! Just so you all know, I love turtles. I have a million stuffed animals and such. I watched Jacob's Ladder last night with the bf. Ok, seriously....this movie frustrated the crap out of me. Gah. Tomorrow is a big day for me. Feeding tube placement. I'm having a lot of second thoughts and just wish it were possible for me to gain the weight without the tube. I'm not too thrilled about running around with a tube hanging out of my side. I know I'll get over it, but it's still an adjustment. My good friend Maryann is supposed to be visiting today. She had a double lung transplant at Duke as well. It's really nice to have someone that knows a lot of what I'm going through. All my testing for transplant has been done except for a few that have to be done out patient, so it's really just a waiting game now. As soon as I can tolerate tube feeds I can go home. The docs are thinking maybe Sunday. I'll go home with 3 days of IV meds left. Whew. I will have been here 3 weeks on Sunday. So ready to leave but very thankful I'm as well as I am. I'll keep ya posted!

Some people to know...

Duke Admission and Transplant

I suck at blogging. Just let me preface with that. Having said that, I will do my very best to keep this thing updated. Recently, things have taken a pretty scary turn. I was put on home oxygen at the beginning of June 2010 and sent home on IV antibiotics. I went through 3 weeks of home infusion and didn't feel I was getting as well as I should. My weight was dropping and I was still requiring O2. I called my docs at Duke and requested a feeding tube...knowing that in order to receive a lung transplant, I need to weigh more. So, the feeding tube procedure was scheduled and I was anticipating a short hospital stay. Things don't always go as planned though, and I had to be brought to Duke via an ambulance. I was starting to struggle for every breath and realized this could be it. How can things change so rapidly? The doctors realized I was very sick and found out the bug they were treating for three weeks was resistant to the drug they had put me on. The clever little bug was stubborn and it took a bit to find the right combination of meds. My doctor quickly understood this was an emergency situation and put my name in the mix with the transplant team. After that, a lot of things started happening really fast. I began evaluation testing for a double lung transplant. Scary, tedious, and exciting. I have gotten most of the testing out of the way and will require a couple of out patient visits for some of the tests. I will also begin a rigorous rehab program to get my body in the best shape possible. This by far has been the sickest I've ever been and the most afraid. I literally thought my family and friends wouldn't see me outside of this room ever again. I was almost put into ICU. I had a lot of conversations with God. I didn't want to suffer. I didn't want people to see me suffer. Thankfully, my Lord and these docs know what they're doing. They found the right drugs and now I'm not on O2 at all, walking around, laughing, eating....enjoying life. Even though I'm still in this room over 2 weeks later, I'm so much better. My feeding tube should be going in on Thursday at around 7:30 am. Due to my excessive thinness, I will have to be put all the way under. I'm ok with that. I have had incredible support from family and friends and people just stepping up when I didn't think some even cared that much. I am a fighter and will never stop. I have too much to be here for. Mainly my daughter, Miracle. She is my entire reason. I am most definitely where I need to be. Without my mother, my boyfriend, my family, my friends, my GOD....I would be nowhere. I am so blessed. Be sure to check out my cousin's blog: nonumber1.blogspot.com which also is following my journey through this transplant thing. So we begin....