Our son was a patient in the Regional Center for Neonatal Intensive Care at Cincinnati Children's Hospital Medical Center for about 11-12 weeks. Shortly after arriving we received a diagnosis that would change our lives forever. 22q11.2 Deletion Syndrome--and Ear, Nose, Throat issues that came along with it--meant that we as parents would be students alongside our son and patient as we learned how to take care of his ventilator, tracheotomy, feeding tube, etc.
Throughout this process Bethany was a constant reassuring presence. We knew that our son was in the best care possible with her, but just as important we felt comfortable learning from her how to take care of him, and she balanced both roles seamlessly. Just as taking care of him is now a part of our life, Bethany made sure to integrate our needing to learn with her needing to care for her patient.
The foundation of our family's relationship with Bethany is trust. She made a very good impression on us initially. Logically, we knew we'd be able to trust all personnel at a hospital with CCHMC's reputation, but putting logic into practice during a difficult and stressful time is another matter altogether.
Bethany's level of care immediately put us at ease, and it didn't take long for us to notice the little extras she brought to the nurse-patient relationship: Stickers cut in shapes (e.g., football, heart) to hold breathing or feeding tubes helped humanize our boy hooked up to machines. Sure, we weren't in his room at home, but what Bethany did reminded us that he's a growing boy who deserves as great an environment as we can give him.
I was most impressed with how Bethany so effortlessly adapted her teaching style between mom (my wife) and dad (me). Mom needs to be taught before putting things into practice while I'm more hands on. However, I also have a "get it done" mentality that inhibits actual learning. To combat this, Bethany started giving me pop quizes. It wasn't enough to know how to change a trach with her doing it with me, she wanted to make sure I knew all the other times, too. After all, she wouldn't be with us for long.
The learning process wasn't always easy. My wife and I are quick studies, but emotions take this type of situation to another level. I'm sure my wife and I would have learned to take care of our son’s medical needs regardless of who our primary nurse was, but I highly doubt we'd have learned how to take care of him and ourselves and do it with love, patience and understanding without Bethany.
Unquestionably one of our roughest days was when we received our son’s diagnosis of 22q11.2 Deletion Syndrome. We knew news was likely to come that day, but I had to work. We prayed that the Lord would be with us even if we couldn't be together. My wife prayed for an angel to watch over her, and she's certain that's what God sent when Bethany worked the day we got the news.
Speaking of his diagnosis, Bethany was the only person on our son’s medical team to routinely refer to his malady as 22q Deletion Syndrome, which is our preferred nomenclature. We never told her this, but in talking about what we learned from online research we did say that we noticed most people who deal with the syndrome refer to it as 22q and not DiGeorge.
Caring for him was never a chore for Bethany, and that rubbed off on me and and my wife, which has had a positive effect on his care now that we're home. Bethany always made our son’s care a natural part of the day. It wasn't something on a to do list, it was something you did as part of your day. I didn't appreciate it enough when she was taking care of him but now that I'm taking care of him at home, I see how important that approach is.