About me and mine

This is a picture of my children and I as we were leaving to take my oldest son to the airport for his first deployment to Iraq. This would be the last time my oldest son saw his brother Adam alive.
Front and Center: Adam
Around Adam L-R:
Bria, Alex, Myself, Ryan and Brittani




My son was a terrific pregnancy and easy birth. He soon developed problems. At 2 months, he was diagnosed with dextro-transposition of the great arteries, ASD, VSD and pulmonary stenosis. He was inpatient at the time being treated for RSV.
Two weeks later, he underwent a cardiac catheterization. It was found that his left ventricle was too weak to perform an arterial switch at the time and a pulmonary artery banding would be necessary to prep his heart. That surgery was performed the following day. 13 hours later, my son went into full cardio-respiratory arrest. It would then be discovered that he suffered a stroke. He also suffered extensive "IV burns" to both ankles from the medications he was receiving at the time of his arrest.
He would be kept in a medically induced coma for 9 days.
To make a really long story tolerable here...
Ultimately my son underwent 18 surgeries:
~3 heart surgeries
~GI surgery (fundoplication/g-tube)
~Muscle biopsy
~3 surgeries for ankle repair
~Triple pelvic osteotomy
~Tonsilectomy
~Intrathecal Baclofen Pump placement with 2 immediate revisions; 2 additional revisions following fusion and later battery/pump replacement with 2 further revisions
~Complete anterior/posterior spine fusion

His diagnosis:
Spastic-Quadraparesis; CVA @ 2 months of age; central apnea; developmental delay; seizure disorder; dTGA S/P arterial switch; pulmonary stenosis; aortic valve insufficiency; ITB pump; scoliosis S/P A/P fusion; chronic aspiration; "Pallor, Lethargy, vomiting episodes w/lactic acidosis"-undiagnosed  

I cared for him at home (with the exception of 8 days when I had surgery myself) for nearly 18 years. I had our home modified to easier take care of him. I also had a medical malpractice suit (settled out of court) and have gone through losing him 8/29/05, as well as settling his estate (formed by the lawsuit).

In addition, he also had limited kidney function, used a communication system, required suctioning, various forms of feeding, urinary catheterization, PICC line use at home, illieus, bounced between school and home school.

We went on numerous vactions and travels, both air and land travel. I also have 4 other children. One with ADHD, 3 with asthma, one with amblyopia, one with migraines

If you think I can help you with anything, please contact me....