I have done a lot of venting about Kiran’s medical team lately, and I just need to show some appreciation really quickly. Thanks to a fellow heart mom, we managed to fall into the hands of who I firmly believe is the absolute best pediatrician in the entire universe – she also employs the best nurse in the entire universe. Dr. J and Nurse R have been an invaluable part of our journey from the start.
As a parent working with them, I have always felt heard, validated, and advocated for. When they don’t have the answers, they take the time to do the research, read, ask the questions, and follow up with me. They take me seriously – not sometimes – every time – and they make sure I know that I am doing the best job possible caring for my son.
They read these blog entries, and instead of ever taking offense, they reach out to make sure I know they are here for me and my son. They let me know that because of my experiences, they will change their protocol to make it better for parents who come after me. They are learning and growing instead of getting defensive or angry when I have been upset by certain things along the way (Mind you, I have never actually been upset at them, though sometimes they may have perceived it so!)
And just now, without question, they are willing to give Kiran a prescription for Nourish, which is a real food full nutrition formula blend that can go through the g-tube. If my insurance will cover it, it will save me a lot of time and headache trying to blend Kiran’s food every day and trying to make sure he is getting everything he needs. They are learning about the blenderized diet along with me, and the fact they have been willing to show so much support from the beginning is huge (I have heard from so many in my fb group about blenderized diets that many medical professionals continue to be “formula pushers” and are resistant to feeding real foods through feeding tubes).
We are lucky to have them on our team, and amidst so much frustration as of late, I just wanted to make sure I took the time to acknowledge that.