COTA for Keegan

Keegan’s Journey 

Keegan was born on September 7, 2014. After spending two months in the NICU, we were able to bring home a 5lb little boy on Oxygen and an N-G (nasogastric) tube. He had trouble feeding and gaining weight, so he was on NG feeds. By the time he was 5 months old, he had been sick several occasions and needed to have ear tubes placed. I remember the anesthesiologist telling me that sedation would not occur until he was seen by Pulmonary medicine. Up until this time, he had been followed by the high risk/NIC clinic. We already had a Pulmonary referral in place for the next week. In my attempt to be proactive, I called my pediatrician and requested a referral for any lab work that may be requested by Pulmonary. My hope was to gain answers versus referrals at his Pulmonary appointment. Little did I know, the lab work would come back wonky and lead to a week inpatient stay, home a few days, and then back inpatient for 8 weeks. After many labs, CT scans, MRI’s, surgery, and a sleep study, we came home on increased Oxygen levels, a g tube, and more specialties on his care team. 

Throughout his infant, toddler, and preschool years, he was in and out of Cincinnati Children’s Hospital Medical Center with respiratory illnesses, including those he was vaccinated against. As a family, we learned more medical lingo and acronyms than we ever thought we needed to know. His Pulmonologist referred to him as their “little enigma”. He was following no textbook profile of a premature baby with Chronic Lung Disease.  In the meantime, Keegan continued to grow, learn new skills, and win the hearts of anyone who knew him. He has an infectious smile and unconditional love. He learned to sit, crawl, and walk with Oxygen tubes, Farrel bags, feeding bags, and a feeding pump backpack.  We learned to enjoy life with our bundle of joy with more equipment than would fit in a regular diaper bag.  

In July of 2021, his Pulmonologist approached us about the possibility of having him evaluated and placed on the list for a double lung transplant. Due to having just lost his older sister in a hiking accident, we delayed the evaluation until December of 2021. After a week’s worth of daily appointments, he was deemed a candidate and placed on the inactive list. By January 2023, his listing status was moved to active.  He is now followed every 3 months by his regular Pulmonologist and his Transplant Pulmonologist. Now, we live life staying within a 4-hour drive of CCHMC, sleep with our phones ready to ring, and wait for the call, which will change his life. As time has passed, he has transitioned from not understanding a transplant means no more Oxygen but a lifetime of meds to asking how they are going to get his new lungs in him and why the sleepy air (anesthesia) makes him not remember the surgery. He knows
how to get around CCHMC and hates when we park by the A elevators as they are
closest to the lab.

After all the tests, scopes, scans, and appointments, he has the dreams of a 9-year-old. He loves everything fire trucks and ambulances. Growing up, his reward for a trip to the hospital was often a trip around our local firehouse to peer at the trucks in the bay. Now, his favorite day of the year is the American Lung Association’s Fight for Air Climb and
handing the medals to the First Responders.  He rides a bike, does Taekwondo, loves being outside, and camping. He adores his family and our ‘village’ of friends. We adore him and can’t wait to see what his future holds after his lung transplant. 

Thank you for your support of COTA for Keegan.

Keegan needs a life-saving double lung transplant. Keegan is my best friend’s son, and
he is very special to me. I will write about his story in the near future, but for now I would like to introduce Keegan’s family’s intentions to partner with the Children’s Organ Transplant Association (COTA) to help raise funds for transplant-related expenses. Help me raise $75,000 for COTA in honor of Keegan! Anything you can give will help. Make a one-time or recurring gift at: COTA.org/COTAforKeegan. Please share this post! #COTAHope

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.