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Oct 16, 2017 Latest post:
Jun 6, 2018
My name is Noah and I was born on September 21, 2007. My mommy and daddy did not know that I was sick when I was born. I came into this world a 7lb. 7oz. healthy-looking baby. However, twenty-four hours after I was born I started spitting up blood and having trouble breathing. In a matter of hours I was intubated being transported from Spring Hill Regional where I was born to All Children's Hospital. When my parents arrived at ACH they were given my diagnosis - Hypoplastic Left Heart Syndrome. Within a few days we also discoved that I had a stroke sometime after birth which resulted in a brain infarct. I came down with an infection and had to wait three weeks for my first surgery. On October 11th, I had the Norwood procedure. During that surgery I suffered my second stroke. I had a good recovery from a heart standpoint, but had a lot of trouble breathing because I had a paralyzed diaphram. I also had very bad reflux and had to get a GJ tube. When I was 4 1/2 months old I finally got to go home! After three weeks at home I was readmitted to ACH to await my second surgery. On March 6th I had the Glenn. It was a rough recovery for me and I still had a lot of lung problems. I had a difficult time coming off of the ventilator and the nitric oxide. After a month I finally got to go home on oxygen, but I was not able to stay at home for long. I had several hospital admissions for multiple reasons, including a fundoplication, diaphram plication, a few heart caths and a severe GI bleed. I finally had a long stretch at home - an entire year - before I went for my third heart surgery, the Fontan. That was my most difficult surgery yet. I spent five days on ECMO, during which I had to return to the cath lab to have a stent placed in my fenestration, and another month on the ventilator. My sternum remained open for two weeks after coming off of ECMO and this prolonged period of time caused problems once it was closed. I had to wear wound vac for an additional month and a half. My entire Fontan recovery took three months. I was home for another great year after my Fontan, then in May of 2011 I was diagnosed with Protein Losing Enteropathy (PLE), which is a rare side effect of the Fontan physiology. The doctors decided to use a steroid therapy to treat the PLE, but the only cure for it is a heart transplant. The doctors were hopeful when they started the steroid that it would buy us some time for me to continue to grow and develop. I took the steroid for a year, and in that year I learned to walk (I took my first step on my fourth birthday!), I learned to communicate using my iPad and I also learned sign language. In August of 2012, the steroid was no longer able to control the PLE. I was admitted to the Pediatric Intensive Care Unit to get IV medications to help alleviate the symptoms of PLE, and on August 22 I was placed on the heart transplant list. After waiting 48 days, a heart became available. It was the perfect heart for me. The surgery was rough and the recovery was long, but on December 28th I was discharged from the hospital with a new, healthy heart.