I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Tuesday, February 14, 2012

CHD Awareness Week--Faces of CHD: Alexia's Story

I was born December 29th, 1985 at 2:35 am. I was born by C-section at 42 weeks gestation I was prenatally diagnosed with hydrocephalus and it wasn't until I was a day old that I was found to have Double Outlet Right Ventricle, Multiple VSD's and Mild Pulmonary Stenosis as well. At 2 days old I had the Pulmonary Artery Banding dnoe. I was hospitalized for a month after that. At 6 months old I had the Blalock-Taussing shunt put in and I was hospitalized for 2 weeks following that surgery.
When I was 18 months old, circumstances changed as did my living situation. I now was in an area that had access to better medical care. I was now seeing a cardiologist in San Francisco named Dr. Stanger. Shortly after I began seeing him, he told my mom and grandmother that there was a pediatric cardiologist in Sacramento and that I should be seen by him because it was much closer and much easier than making the 2 1/2 drive to San Francisco every 6 months.

So by the age of 2 I was seeing a new cardiologist in Sacramento. He was kind and patient and dealt with the incessant questioning by my grandmother. In more recent times it was a joke in out family that Dr. Juris was scared of my grandmother. My mother allowed my grandmother to ask more of the questions when the three of us went to the appointments.

When I was 4, it became clear that it was time for me to have my Double Outlet Right Ventricle repair. It wasn't clear what options the surgeons down at UCLA would go for. So in June of 1990 we drove down to UCLA with my grandmother's husband and my uncle. I had a cath done to check the pressures and so that the surgeon who would be operating no me had an idea of my cardiac anatomy. After the cath my family had a meeting with Dr. Hilel Laks who was to be my surgeon. Dr. Laks was torn between the Fontan and a new experimental surgery that he thought I would be a good candidate for.

So we were sent back home so that he could do his research now that he had an idea of what my cardiac anatomy looked like. In early August we went back down to UCLA where Dr. Laks told us that he though I would be a perfect candidate for the experimental surgery he wanted to do. Apparently I was his ginuea pig.
My Double Outlet Right Ventricle repair surgery took 10 hours. The recovery from this surgery was rough and I coded twice during the 3 week long hospital stay. But finally the day came to leave the hospital and go back home.
The kitten was a gift from my grandmother's husband after my surgery at 4 1/2.
When I was 6, I was kicked out of the special education class I was in. My teachers said that I was too bright and that staying in this program would severely limit me. The goals that were set for me at IEP meetings were being frequently met and exceeded.

When I was 8 years old I caught pneumonia in February and I missed 2 months of school. Thankfully I was able to remain at home with no hospital visits. Two years later when I was 10 years old I caught pneumonia again. This time I was home for a month.

Also this time my mother attempted to admit me to the hospital. My mother took me to the registration desk at the hospital and told the lady behind the desk that she (my mother) was admitting me. At this time my cardiologist, Dr. Juris happened to walk by. He asked my mother what she was doing and my mother told him that she was admitting me. He told her that she cannot admit her own child. He listned to my lungs and my heart right there in the middle of the hospital lobby. He told my mother that I had pneumonia and that he would call in some meds for me.

About  6 months later I went in to see my cardiologist and he ordered a cath. After the cath he told my mother that I need an aortic valve replacement. My mother told him no and that I was doing too well for her to put me through that. My mom lived in denial until I was 12. Then it was almost too late.
Winter break during sixth grade was hard. I was filling up with fluid. I was coughing a dry cough and dry heaving. I was also sleeping on 6+ pillows because I couldn't breathe. I was also sleeping in a strange fashion. I would sit Indian-Style and then leave over with my hands tucked under me. I knew it was heart related but no one else seemed ready to believe that. I underwent test after test to see if anyone could figure out what was going on. There were doctors considering a GI issue so I was hospitalized for that. Tons of bloodwork was also done.

It wasn't until the beginning of February that I voiced my thought to my grandmother. We were walking the halls. I was in my wheelchair with my grandmother pushing me. I said "What if it's my heart?" My grandmother immediately said "It's not your heart" on February 5th, I proved I was right.

I was drinking fries and a chocolate milkshake when I aspirated. The last thing I remember is doctors shouting orders. They were demanding drugs. I was on the vent for a week before the surgeon came to my family and said that I need an Aortic valve replacement on that day or I was going to die.

That afternoon I was rolled into the OR 12 hours later I came off of the OR table. I was in no means out of the woods yet, but I was stable. I continued to have problems. My sats were so unstable that I couldn't be moved without my sats taking a significant nosedive. As a result of that I developed a Stage 4 bedsore on my tailbone that will never fully heal. I was on the ventilator for a month and the first solid food I ate when I was finally off the vent was green grapes. I don't think green grapes had ever tasted that good.
2 weeks later, on March 19th I was discharged. I could not return to school until seventh grade but thanks to the kindness of my teachers, as well as my grandmother's tutoring I was not held back.

When I was 16 I began dating an old friend of mine. It was a whirlwind romance and he proposed after 2 months together. A week after he proposed, I called it off knowing that I was no where near ready for marriage. We dated for a little bit after that but then we called it quits. We still remain good friends to this day.
In June 2005 I was told by Dr. Juris that I would need a second Aortic Valve replacement. I was heartbroken as I was told when I was 12 that the first replacement should last 10-15 years.  However, I was starting to experience symptoms that were indicative of heart failure. Dr. Juris wanted to do this at that point because my right ventricular function was still really good.

June 13, 2005 I had my heart cath. Because I was second case I had to stay overnight at the hospital. In the weeks that followed it was decided that we would go with a mechanical valve this time because the valve life was 25-30 years. the only drawback was Coumadin and the frequent blood draws that I would need. I decided it was worth it to avoid surgery for a long time.

They attempted a Cardiac MRI during the month of June as well but I freaked out. They had had to adjust the leads on my chest several times and then push me in and out of that tiny tube multiple times. I informed the techs that I was going to throw up. They got me out of there and then I sat up and the room seemed to spin. I was a hysterical mess. I was crying and begging them not to make me go back in that tube. Even after a Valium I flat out refused to go back in. The next day I had a Cardiac CT and the only issue there was the techs wouldn't listen to me when I told them where to put the IV in for the contrast dye to be administered. This resulted in nearly 30 minutes of sticking me. Finally the radiologist himself had to stick me himself and he got me on the first try.

Monday july 11, 2005 I arrived at the hospital at 5:30am and by 6:30am I was ready and waiting to get going. Of course I didn't get moving until 8:00am. I don't remember rolling down the hallway to the OR at all. The next thing I remember it's Wednesday and they are pulling chest tubes. I didn't get the second tube removed until Saturday along with the urine catheter. The following Tuesday, just 8 days after surgery I was released. It was my shortest hospitalization following surgery and I would have been out sooner but some old arrhythmia issues had resurfaced. It took me several months to get my energy back but I finally got it and I felt better than I had in a long time.

It took me a long time to figure out what I want to do with my life but recently I have come to the realization that I want to teach preschool. I am very close to that goal already and I look forward to being able to make a difference in a child's life nad in the lives of their families.

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