Our Family
My wife and I have two kids. Our son who is 19, is overall healthy outside of allergies and some asthma that flares up when playing sports. He graduated high school and spent a year in college working toward an associates degree in Welding/Metal Fabrication. During this last summer he started interning at a local metal fab shop and loved it. At the start of the school year it was decided he would transition to working full time and not return to school as the focus would be online schooling with COVID still being present. He loves what he does and has mentioned that it isn’t a job if you love what you do. Over the years he has been a tremendous help with the care of his sister. From giving meds, assisting in her care, helping managing her medical conditions and spending time with her.
Our daughter who turned nine in October, appears to most people to be a healthy child. What isn’t known to the majority of people who meet her is that she spent the first 12 weeks of her life fighting to stay alive. She was born with multiple undiagnosed medical conditions including multiple heart conditions and lung disease. She has also been diagnosed with many other conditions as she has grown.
Our Daughter’s Diagnoses
Below is a list of some of the many conditions she has been diagnosed with starting the day she was born until now.
- Supracardiac Obstructed Total Anomolous Pulmonary Veinous Return, known as TAPVR for short
- Atrial Septal Defect (ASD) – a hole between the two upper chambers of her heart
- Pulmonary Hypertension – High blood pressure in the lungs
- 2nd Degree, Mobitz Type 1 Heart Block, commonly known as Wenckebach Block
- Congenital Pulmonary Lymphangiectasia – a condition causing uncontrolled leaking of fluid from her lungs into her chest cavity.
- Ventilator dependent thru a tracheostomy for almost 5 years due to lung disease
- Tracheal Stenosis – narrowing of the trachea at the tracheostomy site due to prolonged trach use
- Intermittent Exotropia – more commonly known as a lazy eye. Both eyes drifted outward at different times and varying degrees.
Very Brief Medical History
The first 12 weeks of her life were spent in a pediatric ICU under the care of many phenomenal doctors and nurses who fought to keep her alive. After coming home we were able to get home health nursing, which was an immense help not only to her but to our entire family. In her nine plus years of life so far, she has had more procedures and surgeries that most will have in a life time. Through all of the struggles, if you look at her, it would be hard to tell she has any health concerns. There are faint scars that are visible but most people don’t seem to notice.