Overall we had a good appointment today with Addyson’s Pediatrician (internal medicine doctor). The discussion was good and went as Randy and I thought it would. He is taking charge and is going to be the point of contact between all her specialist and the school. He is also working to get us a care coordinator because I have been sending him all the clinic summaries and visit notes from all the specialist. He said we should be able to just worry about managing her care and not have to be managing all the paperwork as well. We said wouldn’t that be AMAZING. HE also said the school needs to track her fluid intake so we have to call an emergency 504 meeting to get all that scheduled – we will be prepared to go to mediation but that HOPKINS can help us with that, they have folks on staff to help with fighting the schools. He said her daily intake goal should be 1800-2000mls w/ 1/2 of that goal including electrolytes, not just straight water
We also managed to get some of her upcoming appointments rearranged so that will be a huge help.
We are so happy that her pediatician is willing to handle so much of this. While yes, the pediatirican should be the one collecting all the data, notes, visit summaries there are so many specialist and a lot of the care she requires is outside of a pediatricians relm. Just relieved that between him and a “care Coordinator” some of this will come off our plate. Making sure we pass each visit summary, test result, etc to him is overwhelming at times. Just so many different moving pieces and not all hospitals talk with other hospitals.