At one month old, when my parents
adopted they were told, "I has a 13% chance of survival to the age of
5."When she was 3 months old they were told by the doctors there was
nothing more they could do... they felt that I had 6 months or less to live. Hospice
started coming to our house to help my family through the darkness. When I 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 me to
grow up!
Miracle #1.On November 19th 1993 when I was 13 months old I
had my second open heart surgery. The operation went well but I would not come
off of the heart and lung machine. I 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 I was 26 months old we traveled to UCLA for my 3rd surgery. My family had been told it was very high risk and I would have a very "rocky" recovery period. I surprised everyone, did wonderfully and was home in 10 days.
Miracle # 3.When I was 5years old she had her 7th heart catherization. In this cath massive ballooning and the placement of 2 stents were performed. I 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.I 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 my body. After 5 weeks in intensive care I went home very weak, in a wheel chair, with a PIC line and 6 more weeks of IV medicine to finish.
Miracle # 5.In my 8th grade year I started having arrhythmias. After trying for 4 months to control my irregular heart beats my condition turned life threatening and I was life-flighted to LPCH. I spent 2 weeks in the intensive care unit as they increased a strong anti-arrhythmia medicine and placed into me an experimental pacemaker/defibrillator.
Miracle #2.When I was 26 months old we traveled to UCLA for my 3rd surgery. My family had been told it was very high risk and I would have a very "rocky" recovery period. I surprised everyone, did wonderfully and was home in 10 days.
Miracle # 3.When I was 5years old she had her 7th heart catherization. In this cath massive ballooning and the placement of 2 stents were performed. I 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.I 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 my body. After 5 weeks in intensive care I went home very weak, in a wheel chair, with a PIC line and 6 more weeks of IV medicine to finish.
Miracle # 5.In my 8th grade year I started having arrhythmias. After trying for 4 months to control my irregular heart beats my condition turned life threatening and I was life-flighted to LPCH. I spent 2 weeks in the intensive care unit as they increased a strong anti-arrhythmia medicine and placed into me an experimental pacemaker/defibrillator.
Miracle #6 Just this past summer I had to go all the way to
Pittsburgh for a heart-lung transplant evaluation. After being turned down by 3
other centers, Pittsburgh was our last hope. Thankfully the surgeon has decided
that he thinks he can successfully do the transplant, but that at this time I
am too healthy.
Looking back at my life, there were more than a few times
when I wasn’t expecting to make it. Now I just celebrated my 22nd birthday with
family and friends. Going to college was something my family didn’t know I’d be
able to do, but I’m in my 3rd year at a community college and I love it.
I was lucky in the sense that I was born with my PH
(secondary to my heart defect) because I have had my whole life to learn how to
cope with this and I don’t have an old life to look back on and miss. But there
have been times when I think about having a normal life or the things I wish I
was able to do (go on roller coasters, fly without oxygen and go into the
mountains) and miss the thought of those experiences.
In all honesty though, I’m not sure I’d change the fact that
I’m sick if I was given a chance to. If I hadn’t been born sick I wouldn’t have
been adopted by the amazing family I have now, wouldn’t have gone to the
wonderful heart camp where I made so many friends, might not have picked up my
two favorite hobbies; writing and performing ASL. Having PH has impacted my
life negatively and I know I will more than likely die from it, but I’ve
learned to look at what it has given me as well.
They say "It takes a village to raise a child." For me 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 and understanding teachers and schools to raise me and allow me to thrive as much as I have.
http://lifeasachronicallyillteen.blogspot.ca/
They say "It takes a village to raise a child." For me 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 and understanding teachers and schools to raise me and allow me to thrive as much as I have.
http://lifeasachronicallyillteen.blogspot.ca/
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