Phoenix The Fighter - Medical & Life
This is everyday life with a medically complex, special needs child.
We are so thankful for all of our supporters, and will be forever grateful for your contributions to making our ‘medically complex life’ less stressful, and doable for our family.
Thank you so much to each & every one of you
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Instagram @Phoenix_TheFighter
Our Story:
Phoenix was born with multiple life threatening complex cardiac & pulmonary defects, due to having a chromosomal abnormality called 22q11.2 deletion syndrome (DiGeorge Syndrome) that affected the way his heart & lungs formed when he was in utero.
He spent 358 days inpatient at Texas Childrens Hospital in Houston TX. Undergoing constant life saving surgeries & procedures. There were many times we didn’t know if Phoenix was going to make it through the night during that year.
He came home from Texas Childrens Hospital at 14 months old, after being inpatient from December 2016–December 2017 — Now with a feeding tube, and tracheostomy + oxygen. His care required full time home nursing, daily therapies, and weekly doctors appointments.
As the years progressed Phoenix underwent several more open heart surgeries at Texas Childrens, and yearly cardiac catheterizations.
He underwent his 4th open heart surgery in March 2020, and still receives yearly cardiac caths to this day.
Phoenix will continue to require more open heart surgeries in the future, along with his routine cardiac catheterizations. He had his trach removed in 2020, but still requires a feeding tube for all of his nutrition.
Phoenix is also diagnosed with autism, and other developmental delays that are related to his 22q11.2 deletion diagnosis. This requires him to have special programs for school / education, and specialized therapies that we participate in weekly to help his development.
CHD (congenital heart disease / defects), is not just a ‘heart disease’. It is considered a chronic illness that affects the entire body. Phoenix will always need specialized medical care, surgeries, procedures, and services for the rest of his life. This is life with a medically complex / disabled / special needs child.
This is our life, and we are so grateful for everyday that we get with Phoenix. He is a blessing to our family, and to everyone he encounters. The toughest, most resilient, kind, loving and funniest little boy ever. We are so lucky to have him in our lives.
Thank you from the bottom of our hearts for your contributions to Phoenix & our family
- Dominique , Evan, Phoenix
Phoenix’s diagnoses:
Phoenix’s cardiac defects : TOF / PA / VSD / MAPCAs - Tetralogy of fallot, Pulmonary Atresia, Ventricle Septal Defect, Major Aorto Pulmonary Collateral Arteries
Genetic defect : 22q11.2 deletion syndrome, also called DiGeorge syndrome
Other: Pulmonary Hypertension, immune deficiency / compromised, Autism, CMV (cytomegalovirus)
To learn more about Phoenix & his journey, please visit our Facebook group & Instagram account
PHOENIX THE FIGHTER - TOF/PA/VSD/MAPCAs- 22q11.2 - CMV
https://instagram.com/phoenix_thefighter?utm_medium=copy_link