Hope in the Hospital

Hi Everyone,

I went to visit two heart kids the other day at the hospital. My mom and I make an effort to go and visit the kids and their families whenever we can because we know how much it meant to us when people would come to comfort us when we were in the hospital. Both were little girls. I had met the other one before and last time I saw her she was full of energy; pulling at my necklace and jumping up and down in my lap. The day I went to visit her though she was extremely tired and she had been sleeping most of the day. It was just another reminder that one day you can be full of energy and then the next feel like you had nothing left in you; especially for heart kids when they are already so tired as it is. She celebrated her birthday on Monday and her mom got teary eyed when she said she had been hoping she wouldn’t have to celebrate another one in the hospital. I gave the mom a smile and told her, “She is young and won’t remember this birthday anyways. But what’s even more important is that she got to celebrate a birthday period.”  

The other little girl I went to visit was a little ball of fire! If she didn’t have the IV in her hand at first glance you would never have known she was sick; until you took a closer look at her and saw her blue lips and fingertips. This little was running all over the place, not giving a care in the world that her IV was pulling at her. We sat down on her bed while my mom and her mom talked quietly and the little girl started to put stickers all over my face as we laughed and played with her SpongeBob doll. A nurse came in and took her temperature and then asked to check her oxygen with the small pulse-ox. She started to cry and say she didn’t want it. (The pulse-ox is just a small piece of tape with a light on it that is able to see the percentage of air you have in your lungs; it doesn’t hurt or anything.) As the little girl cried and said she didn’t want it, I couldn’t help but blame her. While she very well knew it wouldn’t hurt, she still didn’t want it. She didn’t want anything more on her body. She didn’t want anything more done to her. She just wanted to sit on the bed, eat her Doritos and play with her toys like any other normal little girl should be doing. But instead she is cooped up in a hospital room with an IV stuck in her arm and having people poke and prod at her at all of the day and night. I placed my hand on the little girl’s lap and asked her if she would put it on if I did. She said yes and told me she wanted me to wear it first, so I did. She clapped when the machine said my oxygen was at 94% and then she gladly helped the nurse wrap the equipment onto her tiny finger with a big smile on her face. This little girl’s oxygen was at 77% but she had just as much excitement and energy as any other little girl I have ever seen. Once the nurse left the little girl crawled into my lap and told me, “We both have funny hearts.” I held back tears and gave her a peck on the top of her head and said “Yes we do.” When it was time for my mom and I to leave the little girl turned to her mom and repeated with tears in her eyes how she wanted to go too. She kept begging her mom to let her go home. I know the feeling all too well. . . While I know that the hospital is the best place for me when I am sick, I never want to be in there. I never enjoy being in there as a patient. I remember in 6^th grade I would cry to my mom and I would beg her to take me home. I remember telling her “Mom, I’ll even eat that horrible meat you cook if you just get me out of here!” I realize now though that my mom and dad hated me being in there just as much as I did. But I got out of the hospital and I have been able to live these past four years of my life like any other regular teenage girl. Gone to prom, went on Spring Break with my best friends and graduated from high school. I have no doubt in my mind that the two little girls I visited the other day will do the same.

Love and Hope,

Becca

Graduation!!

Hi Everyone, 

Eighteen years ago I was born with a serious heart and lung defect. My parents were told that I had a 13% chance of living to the age of 5. A few months after that my parents had Hospice coming to the house to help prepare them for me passing away, thankfully I graduated out of Hospice Care. Six years ago I was on a ventilator for 12 days, a wound-vac to help clean out my blood stream and was fighting for my life against a deadly infection called MRSA that I had gotten during open heart surgery. Then just two years after that I was life-flighted up to California to get a pacemaker and a defibulator put inside of me at Lucille Packard Children's Hospital. This past Thursday I graduated from Horizon High School. 

As I walked across the stage to shake my principal's hand and to accept my diploma; my eyes filled up with tears. Graduation is a very important time for every person, but to me; this mark yet another milestone that people weren't sure I'd ever get to see. As I shook my principal's hand and posed for a picture I was silently not only thanking God, but also everyone else who has been part of my life. My mom, my dad, all my siblings, my friends, the doctors, the nurses and all the people who have prayed for me over the years. I have no doubt that without each and every one of you, I would not be here today. Whenever I have fallen down, you all have been there to help pull me back up to my feet. You have helped keep my spirits high, even at some of the worst times of my life. I thank you all so much, without you I know that I would not be where I am today.

In the fall I am going to go to PVCC then after two years I will transfer over to ASU. I am debating on studying nursing or psychology. But I know that whatever I choose and wherever life takes me, I have an amazing support system to lean on. Thank you guys for always being there for me when I needed you the most. I love you all. 

The past is history, the future is a mystery; but today is a gift, that's why it is called the present. 

Miracles Happen,

Becca 

Doctor Visit

Hi Everyone,

I got back from my California last night. Our plane was delayed so I didn't get home till around 10:30 PM. My doctor appointment was pretty un-eventful, which is a good thing. They took me off of one of my medicines and put me on another, since the previous one I was on could cause lung problems along with Thyroid problems; hopefully with that medicine out of my system my Thyroid will go back to normal. Other than that, there were no changes. My pressures were still 80 - 85 (a normal person's Pulmonary Pressures are 10-15!) At some point they may take me off of another medicine and replace it with another; but at this time, they are not doing that.

I got to meet a little girl from California who has the exact same thing as me. She is 8 years old and had her 4th open heart surgery about a week or so ago. She was adorable. =) I always love meeting little kids who have heart defects because seeing an older kid with their defect really helps give them and their families hope. If I was able to grow up, then their kid may be able to as well. And I know that kids with heart defects need as much hope and help they can get. When I was talking to her about camp, how we both had Pic Lines at some point in our life and how we both have scars; she just randomly came up a hugged me tightly around the legs. I leaned down and wrapped her up in my arms. Later on the nurse talked to my mom and told us that the girl was extremely shy, so it was amazing how she felt so safe and comfortable with hugging me after she just met me.
Its tough being chronically ill, but if I can give a kid some hope and realize that she will be able to lead a relatively normal life, then I don't mind having a chronic illness.

Love and Hope,
Becca

My Miracles

This was written by mom about me. She sent this out a few years ago on my birthday.

At one month old, when we became Becca's forever family we were told that "Becca had a 13% chance of survival to the age of 5."When she was 3 months old we were told by the doctors there was nothing more they could do... they felt Becca had 6 months or less to live. Hospice started coming to our house to help us through the darkness.When Becca was a year old we were told that "things" had changed with her heart. There was a surgical procedure that could be performed that would enable her to grow up! Miracle #1.On November 19th 1993 when she was 13 months old Becca had her second open heart surgery. The operation went well but Becca would not come off of the heart and lung machine. She was put on ECMO, a portable heart lung machine considered a "heroic measure" and taken to the Intensive Care Unit. Four days later she was taken off of ECMO and a month later she left the hospital.

Miracle #2.When Becca was 26 months old we traveled to UCLA for her 3rd surgery. We had been told it was very high risk and she would have a very "rocky" recovery period. Becca surprised everyone, did wonderfully and was home in 10 days.

Miracle # 3.When Becca was 5years old she had her 7th heart catherization. In this cath massive ballooning and the placement of 2 stents were performed. Becca began bleeding from her lungs... they felt it would be very difficult to stop the bleeding, and if the bleeding did not stop she would die.

Miracle # 4.Becca had surgery at Lucile Packard Children's Hospital (LPCH), part of Stanford, when she was 12 years old. She did well but 2 days after we returned home she was back in a local hospital’s Intensive Care Unit fighting desperately for her life. During surgery she had contracted a deadly infection Methicillin Resistant Stafyloccus Arus (MRSA) that raged through her body. After 5 weeks in intensive care Becca went home very weak, in a wheel chair, with a PIC line and 6 more weeks of IV medicine to finish.

Miracle # 5.In her 8th grade year Becca started having arrhythmias. After trying for 4 months to control her irregular heart beats her condition turned life threatening and she was life-flighted to LPCH. She spent 2 weeks in the intensive care unit as they increased a strong anti-arrhythmia medicine and placed into Becca an experimental pacemaker/defibrillator.

Miracle #6.In October of 2007 Becca was evaluated at for a Heart Lung Transplant at Lucille Packard Children’s Hospital. Thankfully, at that time it was determined that Becca could still be medically managed. She is being followed closely. Every 3 months she travels to Stanford for testing by the transplant team, her electrophysiologist and her pulmonary hypertension cardiologist.Today Becca is feeling well. She is bright, beautiful, funny, sensitive, loving, and "healthy" for her.

They say "It takes a village to raise a child." For Becca the saying would need to be changed to "It has taken five hospitals (in 3 different states), 4 pediatric cardiothoracic surgeons, several pediatric cardiologists, intensivists, pulmonologists, pulmonary hypertension specialists, infectious specialists, nurse practioners, nurses, respiratory therapists, a wonderful pediatrician, a special child psychologist, a loving family, caring friends andunderstanding teachers and schools to raise Becca."If Children have the ability to ignore odds and percentages, then maybewe can all learn from them. When you think about it, what other chance isthere but to HOPE? We have two options, medically and emotionally: give up,or FIGHT LIKE HELL". -Lance Armstrong

I have been through a lot, but I will not stop fighting. I cannot stop fighting.
Love,
Becca