We have received a letter.
I believe that our voices are being heard but not understood. There is just no way that two nurse navigators will ever be able to do the work of a physician and her support staff.
I’ve been able to call Dr. Muir on call at all hours of the night and speak with her or a member of the team about what’s going on with my guy and she’s had medicine called in to the pharmacy the next morning all to prevent us from having to make a two hour hospital trip. Nurses can’t do that.
I’ve been able to schedule a video visit when Louie was making odd movements that I have been concerned about. The nurses won’t be able to see us for a video visit and help me try and understand what’s going on with my son. Nurses won’t be able to diagnose or help treat anything new that pops up, and if you’re talking in terms of children with medically complex cases, that happens more often than any of us would like to admit.
Dr. Muir and her team have worked hard to provide me resources every time we have gone home to Philadelphia, and most recently, given me recourses for a permanent move to the east coast. Including a list of palliative care physicians, early intervention therapies, the hospital systems in the area, etc. Nurses won’t be able to access a palliative care network and give recommendations on which one they’d advise without reading google reviews.
Dr. Muir has been the one and ONLY physician we have encountered after our son has left the NICU who has been able to tell us, face to face, news that no parent wants to hear. No matter how hard that is, I am forever grateful for her. Our last admission in December, our guy was there for pain of unknown origin. After numerous tests, after changing a lot of medications, after a month in the hospital, she was the only physician that said in other words (to put it simply) “This may just be your son’s body slowing down due to his brain injury, would you like to take him home on comfort measures?”
She is the ONLY reason my son spent Christmas at home with us. No nurse can have that conversation with a family. No nurse will ever be able to send a sick child home without any answers.
The point of this update is just to continue to raise awareness. This is not to bash the program Mercy is trying to create. It’s not to bash those nurses either. I am sure they are wonderful and beautiful human beings who just want to help. If they are coming from the NICU, I KNOW FOR A FACT that they are amazing, caring people with the most incredible hearts. I just know and understand the nursing scope of practice. Nurses will not be able to do half of the things that Dr. Muir and her team could do. The purpose of this is to only help everyone realize, Mercy’s answer is NOT GOOD ENOUGH.