I talked to Matthew's C.M on Tuesday. What a difference from the C.M in Pensacola who never followed up with us when we asked for help! Dianne got the scoop from the EEG & Neuro appointment. She seemed a bit frustrated with the result. She was happy that Matt was referred to the Epilepsy Clinic and said she's call them when we got off the phone so she could get the status of referral (by they way, the Epilepsy clinic called me within hours of me talking to Dianne).
Dianne felt that we are at the highest level of care at Phoenix Children's Hospital. She felt that if we do not get a good plan of action/results from the Epilepsy Clinic, she will help us to get to the next level of care. That level of care would probably be some sort of Neuro Institute....maybe in California. She said that our insurance will pay for the flight, hotel, food, etc because we have exhausted our options in Phoenix. There is another hospital out here that has a Ped. Neuro department, but it is equal to PHC, so instead of going there, we'll go to the next level up.
I am so relieved. I finally feel like we are going forward. Dianne told me that in Pensacola, we could have our insurance help us get to the next level of care (most likely Miami). I had no idea, so this did frustrate me a bit, but I'm glad we came to Arizona because I truly feel that we are on the right road now.
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