Brayden's core group I would consider to be his pediatrician, neurologist, GI specialist and the nutritionist for the ketogenic clinic. These doctors and their nurses are a vital part of Brayden's life, his medical care, coordination of Brayden's medical needs and my sanity.
During Brayden's hospital stays and ER visits this past month, each one of them was involved...
I called the pediatrician from a closet in a panic when Brayden was in radiology (Brayden's nurse was with him while I was calling from the storage closet) and they could not get his g-j tube back (I might tell you what really happened later). She called another doctor in the hospital to help me figure out the steps we needed to take. A couple weeks before that she gave me a hot tip on Georgetown Cupcakes.
While admitted to the first hospital, for the feeding tubes, the neurologist called my cell phone to check on Brayden. Asked if we needed a neuro consult or if she needed to order additional medication. Then in the ER for seizures, I emailed her and she called the ER doctor immediately. Once at Children's hospital (we were at Fairfax for the feeding tubes, Children's for the seizures) she came to visit him in the room, talk to the neurology team on the floor, made suggestion for the best medications, and help us get home quickly.
By the grace of God, Brayden's GI doctor was at the hospital that week for his practice. The GI doctor was an advocate for us. We knew the procedures that were not an option for Brayden (i.e. nissin) despite a surgeon who was determined to give him one. Then when Brayden was in the PICU, he came and told the ICU team that we were good at the medical things and very capable parents.
The ketogenic nutritionist was on the phone several times with the hospital dietitian making sure any IV, TPN and food was exactly the proper liquid mixture for Brayden's ketogenic diet. Then once Brayden was in Children's she was the first face we saw in the room. Just this week, I emailed her saying that Brayden was in the lab getting bloodwork done and if she needed to add anything. She immediately responded, with the goal to minimize the trips to lab and try to get everything in one stop.
All of these people help us navigate Brayden's seemingly more and more complicated medical needs.
I was talking with a friend today about it all, sharing that these doctors and nurses become part of our regular routine and are a primary role in our support system. We see them and talk to them more than family. Brayden recognizes them and clearly knows when he is in a doctor office. They know Brayden. They know me. I know the crazy came out a bit this last month and even so, there is a mutual respect. I do not know what we would do with out them and the nurses.
I realize I am going on and on about his doctors...probably boring to most of you. But I cannot stress enough what a difference they make in Brayden's life and mine...they help me NOT be the crazy mom.