Anonymous wrote:As someone who has spent their fair share of time at Childrens with a DD with a terrible chronic medical condition, I have learned to use my voice (respectfully and calmly) when things do not appear right.
I am forever grateful for the amazing care we have received and continue to receive but I also recognize the importance of being an advocate as we’ve had things missed on more than one occasion simply because the situation is complicated. Sometimes the RN and MD are right that there is nothing to worry about but sometimes, advocating for my child, who I know inside and out has led to avoiding further crises.
My words of advice are to remain strong respectful allies with your DD’s medical team but to advocate and voice your observations. My thoughts and prayers are with you as someone who intimately knows the sleepless nights and frank traumas of the lives experience for your family and child.
+ 1 though my experience comes from multiple intense ICU admissions for a parent. The doctors and nurses do their best but they’re not on top of patients 24/7 like a family member can be. It isn’t like hospital TV shows. You have to repeat the pertinent history at every shift change. Ask your questions, push as needed, say “I am concerned she looks worse today than 12 hours ago and I would really appreciate it if you could keep a close eye on her today and check in more frequently than you might otherwise do.”
Praying it’s a “two steps forward one step back” thing, OP. It likely is. These things are often not neat and linear.