Cole's Story

Today, I want to share Cole's story with you.  Cole is the 8 month old son of my very dear friend, Sabrina and her husband Trey.  He's also the little brother of Miss K, their beautiful 8 year old daughter.  He is the other little guy I'm walking on behalf of in the March for Babies next month.

Cole was born on July 5th in East Meadow, NY at a healthy 8lb, 21in. However, despite how young he is,  he has already endured so much. He spent his first few weeks in the NICU on a ventilator because he could not breathe on his own.  The medical team feared he was born with a surfactant deficiency that would require a double lung transplant.  They also discovered he was in renal failure with creatinine levels being three times what is considered within normal limits.  He was transferred via helicopter to Children's Hospital of Philadelphia where he spent another month.  However, by God's amazing grace, Cole's lungs seemed to be healing themselves and got stronger with each day.  The doctors still don't know what caused his respiratory distress or how his lungs got better.  However, his family and friends know it was God answering the many prayers lifted up for little Cole.

Because of Cole's respiratory distress, he was fed via an NG tube for fear of aspiration.  Once his lungs got stronger while in the care of CHOP, they tried to introduce the bottle but he would tire himself out and his oxygen saturations would drop.  Eating was just too much work for him.  It was also around this time that he was noted to be hypotonic, meaning he had decreased muscle tone.  At the time they thought it was due to the amount of time he had been in the hospital and how much energy he expended just trying to breathe.  After two months of living in the hospital, Cole was well enough to be discharged and finally go home.  He was discharged with an NG tube in place to supplement his bottle feedings.  That was later changed to a PEG tube, which is a surgically placed feeding tube that goes directly into the stomach.

According his mom and team of doctors, Cole is the "healthiest sick kid"  around.  He continues to have an elevated creatinine level for reasons unknown, but thankfully, the levels have continued decreasing. Genetic testing has been done but still there are no answers for his family as to why he continues to have the irregular breathing patterns, feeding issues, low muscle tone and elevated creatinine levels.   He works very hard with his speech therapist, physical therapist and occupational therapist.   With all his hard work he is now only behind about 2 months developmentally.  He also visits his pediatrician,nephrologist,  gastroenterologist and neurologist frequently, as well as the lab for blood draws. He's such a trooper and so is the rest of his family.

Cole seemed to enjoy and do well with solids (pureed baby food) when they were introduced.  However, recently he has completely refused to take anything by mouth, meaning his family is having to meet his nutritional needs via his G tube.  The therapists and team of doctors again have no explanations for this.  Cole and his mom are headed back to Children's Hospital of Philadelphia on Monday to be evaluated for an intensive feeding program designed to help Cole learn to eat.  Unfortunately, insurance companies rarely approve this treatment, despite it's success in helping infants like Cole.  We are praying that with the results of Monday's evaluation, it will be approved by their insurance company.  If it is not, the program will cost nearly $40,000 not including travel expenses, lodging, parking, meals, etc. that go with having to be near the hospital for treatment.

I am asking that you will keep this family in your prayers.  I am also seeking out volunteers to assist in fundraising for this family to offset the treatment related costs not covered by insurance.  If you are interested in volunteering, please contact me at unspokenangel24@hotmail.com with "COLE" as your subject.

You can follow Cole's Story here.