This is fitting, since I didn’t get around to posting yesterday due to Kiran being ill. And I am sitting here attempting to be coherent this morning after basically sleeping not-at-all last night, due to Kiran coughing, crying for me, and gagging as if he was going to be sick all over the mattress I pulled to the floor so he could safely sleep next to me (That’s love – or insanity – it’s a fine line).
I never thought I would live a life where doctors and nurses would really matter to me the way they do now. I hate going to the doctor – still do – but it has always been such an infrequent nuisance for me. I never gave much thought – or had much of a relationship – with any of them.
But with Kiran, it’s different. With Kiran, we have relied on doctors and nurses from the beginning. We have lucked out and started with some really great doctors and specialists on his team – and we have had to rework some of his team along the way to provide the best care for Kiran. I feel solid with everyone currently on his medical team and am so pleased with the relationship we have with them – and they have with Kiran. We truly have people who care about Kiran’s well-being.
And the nurses. We have had so many great ones, but two have really had significant places in Kiran’s life. When I had to say goodbye to Nurse K, Kiran’s home health nurse from birth until after synagis season when he was one, I was terrified. She was someone who stopped in once or twice a week to make sure Kiran was doing okay. She was the one who kept me sane and patiently answered all my many questions, and she cared about Kiran so much too. Losing that relationship was hard – I wasn’t sure I could do it on my own. I have learned that I can, but we still miss Nurse K. Nurse R is another one who has known Kiran since birth. She worked in his pediatrician’s office up until recently – and – thank goodness – was kind enough to allow me to still message her with questions/concerns even though she is no longer working there. She knows Kiran’s health history – and Kiran’s personality – so well, and truly loves him. I messaged her just last night, wondering about the best course of action (doc visit or not) if I have suspicions Kiran is battling the flu. She never makes me feel crazy and always puts my mind at ease. I can’t imagine not having her in our life, especially when I’m spiraling within my anxiety and don’t see the point in talking with someone who *doesn’t* know Kiran.
I know there will be turnaround. We had to say goodbye to one of Kiran’s specialists this past year. His endocrinologist, the last specialist to join his team, so it stung a bit less than if it had been a more long-term medical team member. But I know the day will come, and I dread it. We have good people who genuinely care, and I couldn’t be more thankful for every single one of them: Kiran’s pediatrician, cardiologist, gastroenterologist, genetic ophthalmologist, orthopedic surgeon, geneticist, endocrinologist, feeding clinic team, and neurodevelopmental team – and of course, the nurses. The doctors couldn’t do it without them, and we couldn’t either.