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Want to know my story? When my mom was 6 months pregnant she found out I was going to be born with some serious problems. We lived in Japan at the time and she was flown to Hawaii for an ultrasound and found out I only had HALF of my heart--a condition known as HYPOPLASTIC LEFT HEART SYNDROME. Doctors told her she had 4 options: abortion, palliative care (which means do nothing & I would have ultimately passed away within a couple of months), heart transplant, or a series of 3 surgeries to restructure my heart. My mom chose the surgeries. When I was 4 days old, I was taken by helicopter to Children's Hospital of Philadelphia. There I had my first surgery. My next surgery was when I was 6 months old and my 3rd was when I was 2 years old. I've had chest tubes, pericardial tubes, nasogastric tubes...you name it! After my 3rd surgery, my airway was very damaged. I had scar tissue from so many intubations for surgery. The doctors decided I needed a trach. This meant my mom didn't get to hear my first words like most babies, she could only read my lips. Luckily, I got to have the trach taken out after a year. But I still have a scar. People who do not know me like to stare and ask questions--but little do they know, this scar kept me alive. Fast forward a couple of years and I've developed a condition that is a complication of my heart surgeries called protein-losing enteropathy. I literally leak protein--the stuff that fuels our muscles--through my gut. This causes malnutrition and digestive issues. Think I've had enough? Nope! I developed another complication from my surgeries--plastic bronchitis. Little particles clog my airways, making me short of breath. Not fun. Especially when I'm trying to walk the halls of school or partake in PE. Fast forward to now, I am in the fight of my life. My little heart has been through a lot in 14 short years. It is getting tired. My doctors say I need a heart transplant. I have good and bad days. I get tired when walking, short of breath and dizzy. So if you have wondered or wanted to ask--there is your answer. I may have half the heart, but I have a full fight in me.
Hey everyone! We created this account to give updates on Blake's journey. Blake is currently going through medical evaluations to be placed on the heart transplant list. This page will be maintained by Blake, Blake's mom Nicole, and myself (Blake's aunt Megan). Blake's current health has been slowly declining. His protein-losing enteropathy (PLE) has resulted in digestive issues, blood loss, and subsequent anemia. This is making his shortness of breath worse and therefore limiting his activity. He is currently getting albumin infusions and Lasix bi-weekly to help pull protein back into his blood and remove excess fluid. This is done in both in and outpatient settings. This is a bandaid for about 3-4 days of feeling "okay". Doctors have determined the answer for this will be a heart transplant. We will use this page to post updates as we get them. Again, Blake will be signing on so please feel free to leave messages of love and hope--hospital stays get boring so we hope this will bring him some. Current treatment is at Norton's Children Hospital. Thanks for following along with us!
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