A year can be measured several ways. 12 months. 52 weeks. 365 days. But to us, we measure a year one day at time.
Yesterday marked the one year anniversary of Bug’s trach surgery. The reasons that led to our decision for Jadon’s trach were burned so vividly in our minds. The extreme respiratory distress episodes that resulted in single digit oxygen and heart rate readings – and more times than we care to remember, no reading at all. But Jadon always bounced back, so we knew he had a lot of fight in him and we would happily go as many rounds as he wanted – no matter what the odds. And with Jadon’s baby sister due to make her appearance in December 2012, it was extremely important to us that he get to meet her and she meet him.
That morning I walked down the hallway into the OR with Jadon telling him how proud I was of him and that everything was going to be great. That last piece was more of a pep-talk to myself – to trust that everything would be okay. Surgery is risky for anyone, but for an SMA kiddo, the stakes are heightened. The next couple of hours Tony and I paced around the hospital room until we finally got the page – Surgery was done. Jadon did great and they would bring him to his room in a little bit. When they brought Jadon in, streams of doctors and nurses piled in but I didn’t really see them. The ENT surgeon began telling us about the surgery, but I struggled to focus on his words. My eyes were just fixated on Jadon’s face and I kept thinking over and over how handsome our little guy was. I didn’t notice the tube now attached to his throat or see all the equipment surrounding his bed. All I saw was him. The remainder of the day was a blur, but I distinctively remember sitting by Jadon’s bedside holding his hand and starring into his face. Running my fingers across his forehead, cheeks, bridge of his nose and thinking how insanely good it was to see his little face completely mask-free. Up until that morning, Bug had a bi-pap mask on more hours during the day than off. And to wake up the next day and be able to give him kisses without dodging the mask was absolute pure joy.
The next couple of weeks in Madison and even the weeks that followed after returning home we continued to learn more and more about his trach, but never once did we regret our decision. Knowing that Jadon had a more stable airway was comforting to us and allowed us to “breath” just a little easier too. Because of the severity of his episodes, we are quite certain that without the trach we would not have gotten to experience the amazing milestones of this past year with Jadon:
- First Day of School
- Welcoming Gracyn into our family
- Skyping into school
- BUG Run (all the media appearances)
- Bad News Bears
- 4th Birthday
Yes, a year can be measured several ways, but we will continue to measure them one blessed day at a time and all the while, dance in the rain.