Freedom

I have been off of oxygen during the day since Sunday. It feels so good not to have to carry around a tank or have a cord follow me all around the house.

And as of this afternoon I am free from Home IVs. My pulmonary function test went up a point since I did it a week ago, so the doctors stopped the IVs.

I am also having second thoughts about having withdrawn from BIOLA last Thursday since I am feeling so good right now, but I know that can all change in a flash. So for now, I will help around the house and help my sister with her math class.


*My Dad is a "GO" for being a transplant match, now we wait to see who else might be able to donate.

A Little Update

I am finally back at home (came home Wednesday night). The doctors are keeping me on home IVs though, to try and keep me healthy longer. Even though I have to wake up in the middle of the night to do an IV, I am so glad to be doing it at home.

With everything that’s going on I withdrew from BIOLA on Thursday. It’s a bummer that I won’t be going to school this semester and maybe this year, but it’s for the best.

My dad continues to go through testing to be a donor as the doctors look at the other people who were willing to go through the testing to see if they are a match.

A Roller Coaster Ride

So life stinks. I thought I would be going home today but surprise I am here for at least another night. My white count went back up to 19, so the doctors want to make sure it goes down before I go home. Home, what a wonderful word; I wish I was there right now, and I would have been if the blood test went the way it was suppose to.

On the brighter side, my Dad had a stress test today and I think he did well. Mom is now working on her supportive skills so she can be up for the job when the day of surgery comes.

The Ups and Downs of the Day

So I should be going home today : ) I thought I would be going home after my 8:00 am IV, but nope I have to wait around for a blood draw and my 2:00 pm IV. But that's ok, it means I am here to comfort my disappointed mom.

My parents went for a Pulmonary Function Test today and had different results. Dad passed with flying colors but Mom well she didn't pass (she doesn't like the word "fail"). But this is for the better, now Amber won't be alone when the surgery happens and my mom can be the support person for the family. My Dad will continue with the testing today, but Mom is finished since she failed (I mean she didn't pass).

Let the Games Begin

And it begins...

Mom and Dad began their testing today to see if they will be excellent donors for me. I believe they...

had 14 tubes of blood drawn

had an x-ray

and had to pee in a cup, lol; the love my parents have for me that they would pee in a cup.

They will continue with other tests to determine if they are good candidates.

Thanks Mom and Dad for going through all of this to help out your little girl, it means the world to me.

Mr. Toad's Wild Ride

What a wild ride...

ICU on the 7th floor Thursday

6 South on Friday

ICU on the 8th floor Sunday

6 East on Monday

I have moved around so much this visit I get dizzy just thinking about it.

As of now I am feeling better. I am hoping to get out soon and go home on IVs, hopefully Thursday or Friday but that might be wishful thinking.

From the Beginning and a Bit of Today

How do I begin...


May 1, 1990 - My parents received the test results saying that I did in fact have Cystic Fibrosis.


Summer before entering 3rd grade - My first hospitalization at CHOC (Children's Hospital Orange County)
          I can still remember the nurses putting the two IVs in my arms as I screamed bloody murder. My dad bought me a butterfly balloon when I was done to cheer me up, it worked. During my stay I had 2 bronchoscopes to remove mucus that was not showing up on x-rays but was hindering my breathing; I left the hospital much better than I came in.


February during 7th grade - My second hospitalization at CHOC
          During this stay I received my feeding tube that I still have today. At the time I thought it was the end of the world to have something on my stomach that wasn't a bellybutton ring, lol. Over time I have come to appreciate it knowing that if my appetite isn't the best I can use it to keep my body fed. *Little tid bit about this stay: I use to have a "blankie" that I would keep with me when I went on trips (or hospital stays), but when I went for a procedure and came back the cleaning ladies had taken it away in the bedding when they cleaned the room. I still miss that thing, it was so soft and silky.


Junior year of high school - My third hospitalization at CHOC
          This stay my teachers from school came to visit me along with some friends. Knowing that they were there for me made my stay a bit more easier.


From here on the hospital stays grew closer making them a bit less easier to track. Since Spring of 2008 I moved from CHOC to USC University Hospital. The transition was hard because I was leaving of all the doctors and people I knew over at CHOC, but I am so glad God has placed my new doctors in my life, they have been a blessing.


November 11, 2009, I was put on the Lung Transplant list through USC University Hospital. This was hard for my family and myself to accept because of what it ultimately meant, "I was getting worse and getting closer to the gates of Heaven."


Since January 2011, I have been in the hospital four times, making today the fifth round of treatment. It's been hard being here so much, but I am glad that I have been able to get to know most of the nurses here, it makes it feel a bit more like home.


Today I write from the hospital bed in ICU hoping to move once my desensitization is complete. I will continue to write, to keep anyone who wants to know, updated on the transplantation process.