Most of you reading this have known me for many years, decades, and some even a lifetime. Many of you have known me since getting married or having children and some of you may have no clue who I am, but can definitely benefit from understanding Cole’s journey. Regardless of which category you fall, I appreciate you and hope that this helps you in some way; Relatability, education for your own loved one, advocacy, or even just perspective.
Cole was born in 2014 and was not breathing upon delivery, this was the first hurdle to overcome. Within hours of birth, Cole was transferred to Loyola Hospital since his airway was too small to properly be intubated with a 2.0 premature tube. Hours after birth, Cole still hadn’t had a wet diaper and it was determined he had a valve obstruction and massive fluid build up in the kidneys. One kidney was very small and didn’t function at all and the other kidney was so damaged from hydronephrosis that is functioned less than 45%. Within 2 days Cole had a tracheostomy placed to provide him with a secure airway. In addition, he had arthrogyposis, which is several contractures in his arms and legs. He had several congential anomalies such as no nails on his big toes, hemoglobin on his liver, ASD on his heart, and other facial abnormalties.
The above paragraph may seem like enough for one individual to endure, but we learned almost daily of, yet, another obstacle Cole would need to overcome. He requires a gtube to eat, profound deafness in both ears, non verbal, and severe scoliosis.
During Coles 254 day stay in the NICU (4 different hospitals) he would persevere through sepsis that shut all of his organs down (requiring dialysis). He would survive 2 learjets and multiple transfers to different states, he would push through slide tracheoplasty surgery which is where they operate on the entire airway during cardiopulmonary bypass for 14 hours. He was put under anesthesia hundreds of times, poked for blood work daily, almost daily xrays, coded and resuscitated more times than I’d like to recall, and drugged up so much to remain pain-free that we really didn’t even get to know his little personality. Meanwhile, every new Doctor tried to diagnose him. We heard everything from Trisomy 18, Freeman Sheldon, Kabuki syndrome, and hundreds of other guesses. At the end of the day, he’s undiagnosed.
Throughout Cole’s 6 years each of his obstacles he’s needed to overcome have taken turns being a priority. For a little guy that had every card stacked against him, told he had less brain activity, wouldn’t walk, and most likely wouldn’t live, he is living his best life!
He’s got a personality that can light up a room, his smile and laugh is contagious, and his sense of humor is second to none. Most recently, the new priority has been his scoliosis. He has an 89 degree curve in his spine and it has taken precedence over anything else. He is scheduled for Magec Rod surgery 8/5/2020, assuming Covid-19 doesn’t cause this to be delayed. Magec Rod is where the Doctor will take titanium spinal rods and place them using pedicle, screws, hooks, and connectors. Each rod has a small magnet, these magnets allow the rod to lengthen without invasive surgery every time, like traditional rods.
We are getting Cole prepped for this surgery by discussing the importance of this procedure and what it could mean for his future, balance, walking, running, height, and more room for his organs. If you’ve ever thought having these conversations with your child was difficult, try signing all of this using ASL to a deaf child. YouTube has been a life saver in so many ways; Learning ASL, trach care, fixing ventilators, and understanding the anatomy and surgeries.
Stay tuned to surgery day 8/5 for the latest and greatest.