September 17th, 2019
Kaden finally was right where he belonged. Home, with me and all his belongings I collected for months. It was such a different feeling, but yet so amazing. Here I am writing this, nearly a year after he has come home and it still feels like it was just yesterday. He has grown and learned so much during this year and so have I.
During this year, we have experienced many hospital stays, all from the rhinovirus mainly (a common cold). Basically every time he gets a cold, he has required oxygen support. When he came home, he was on oxygen still, 1/4 liter. We had to get adapted to being free but yet still connected and on a time limit due to oxygen. his first hospitalization came in November 2018. We ended up there for 5 days just letting the cold run its course and supporting his increase of oxygen needs. He had to go back on high flow oxygen for most of that stay and nearly be intubated. But thankfully, we were able to avoid that. We weren’t new to the hospital atmosphere, but it was so much different than the NICU.
Having a child with chronic lung disease poses a number of possibilities when it comes to illness. He can not handle illness like a healthy full term newborn typically could. His prematurity along with his chronic lung disease and his heart defect creates a recipe that makes it much harder for him to shake the cold. Other than that, we spent the year attending follow up appointments, finding and meeting with new specialists and weaning him off of oxygen.