After an uneventful labour and delivery, Lucas was born in January 2016 at 38 weeks. We held him for 27 minutes before he needed breathing support and was taken to the NICU at McMaster Children’s Hospital. Thankfully, we knew McMaster well and because we had received a positive genetic test at 5 months pregnant, we had met some of the doctors that would be involved in his care. We knew our son would be born with Congenital Central Hypoventilation Syndrome, which means he stops breathing when he sleeps or is unconscious. This diagnosis comes with a lifelong nocturnal ventilation need.
During our 105-day NICU admission, Lucas quickly showed us that he needed invasive breathing support. This meant a tracheostomy to support his breathing via mechanical ventilation as well as a g-tube to support his feeding and growth. Along our NICU journey, we had over 19 health professionals involved in Lucas’ care and once we were discharged home, we had a whole new team of community health professionals to meet! Slowly but surely, Lucas’ health stabilized, his feeding tube was removed, and he quickly met his developmental milestones. Within 14 months, he was walking and talking, and he developed passions for singing, reading, hockey, and everything superheroes.
In the last 10 months, Lucas worked really hard to wear his giraffe mask (like a sleep apnea mask) at night so he could get rid of his tracheostomy. Lucas went into the operating room on August 13, 2021, where his tracheostomy was successfully removed and closed. However, Lucas had unexpected cardiac challenges which presented shortly after the tracheostomy removal. A transfer from McMaster to Sick Kids saw a cardiac pacemaker implanted. With the pacemaker, we have been given peace of mind that Lucas’ heart will be protected, and hopefully, future cardiac emergencies are prevented.
Part of Lucas’ motivation to work towards removing his tracheostomy came from his desire to swim and go to school without a nurse- both of which are extremely limited with a tracheostomy. Now, Lucas is excited to learn to swim and enter kindergarten alongside his cousins and friends. Having reached these significant medical, individual, and social milestones, we are thrilled to receive support from the Guelph Wish Fund to make Lucas’ wishes come true. Lucas has wished for a pool party and to go to Disney where he can meet all his superheroes and go on gigantic waterslides. We are extremely grateful to Guelph Wish Fund for helping make Lucas’ wishes come true.
Shannon, Logan, and Lucas
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