Colton Murray was born December 2015 with Down syndrome, multiple complex congenital heart defects (Tricuspid Atresia, hypoplastic right ventricle, unbalanced AV canal, Tetrology of Fallot, & leaky cleft mitral valve), aberrant right subclavian artery, & Hirschsprung's Disease. Colton spent 6 weeks in the NICU. During that time, he had his 1st heart surgery (BT Shunt & PDA Ligation) & 2nd surgery (Gastrostomy tube for feedings) before going home. At home, we cleaned out his bowels with rectal irrigations while Colton gained weight for his next surgery.
At 4 months of age, Colton had his Hirschsprung's surgery, a Soave Pull-Through, to remove part of his colon. After that Colton spent many months at home, returning only for monthly followups for each specialist. He got his first pair of glasses at 6 months of age & in September 2016, Colton had his 1st heart catheterization to prepare for his next heart surgery.
In December 2016, Colton had his 2nd heart surgery (open heart), a modified bidirectional Glenn Shunt & cleft mitral valve repair. After surgery, Colton did well for a few days, but then became very ill. He crashed Christmas morning & a bacterial infection was discovered in his lungs. He then crashed again in January 2017 from a fungal lung infection. After a 2nd heart cath & 40 days on a ventilator, Colton was extubated. After a 3 month hospital stay, he went home on oxygen with chronic lung disease & many new specialists following him.
During the summer of 2017, Colton had frequent hospitalizations due to fluid imbalance. (Fluid overloaded or dehydrated because he relied heavily on fluid management & his many diuretics.) On August 1st, 2017, Colton had his 3rd heart cath & his collateral vessels coiled. During this cath, he went into cardiac arrest & was shocked back into regular rhythm. After recovering from cardiac arrest, Colton had his 3rd heart surgery, a PA banding, while still in the hospital.
Shortly after discharge, Colton returned to the hospital again with suspected Mediastinitis/Cellulitis and at one time, was on a regimen of 5 antibiotics (More than anyone else at Riley Hospital at that time). He stayed on a variation of antibiotics for a month. While on the ventilator, it was also discovered that he was positive for Aspergillus. He is still currently on this 12 week antifungal course. Now, nephrology is also following Colton due to chronic kidney disease. It will be weeks/months before we actually know the state of his kidneys. Colton is currently in the hospital working toward a new diuretic regimen that can be managed at home.
Colton is expected to have future procedures, including hopes of getting healthy enough to qualify for his "big" heart surgery, the Fontan. He is also continuing testing for an immunodeficiency & suspected to have an abnormal lymphatic system.
We do not know what Colton's future holds, but we plan to give him the best possible life through all of our ups & downs. He has a contagious smile & a wonderful personality. He is absolutely adored by his best friend (4 year old brother) and everyone who meets him. Life is better for those who truly know Colton.
We are starting this fundraiser to help with many added expenses: Small things not picked up by insurance, many months living in hotels, food expenses while we stay in the hospital, gas expenses driving back & forth - not only while Colton is inpatient, but also as he sees 12 specialists at Riley Children's Hospital outpatient.
Updates to Colton's journey are posted on Facebook at https://www.facebook.com/ColtonStrongHeartWarrior/