I was able to get in touch with the Neurology department at Tulane Hospital today and the scheduler was able to get us on the schedule for Thursday morning. I confirmed the date, but she still needed to call the nurse over at Jayden's Drs office to have her to call for the authorization from Tricare and to have her to fax over the order. I do believe it would have been MUCH easier for the nurse to call Tulane herself, but oh well, it's done. I'm still not understanding why he needs a 4th EEG done, though. We KNOW he has epilepsy and we KNOW that his seizures are breaking through the current meidcations. At this point, I have no idea what information she is trying to find by doing a 4th EEG. He has to be sleep deprived for it so we will keep him up until midnight on Wednesday and send him to school on Thursday morning. Then we will pick him up early and head over to Tulane for the EEG scheduled for 11:30. The hard part will be keeping him awake for the ride to the hospital. His genetics appt is scheduled for next Tuesday. If we don't start to get some answers or, at the very least, some medication adjustments or changes, we will be switching doctors.
My mom is the head of her nursing dept and was very upset about the experience I had with the nurse last week. She said that it definitely sounds like the nurse is sending me information prior to seeking advice from the Dr, especially with the refusal to refill Jayden's medications. I do hope that no Dr will ever refuse to refill a patient's seizure medication without good enough reason to do so! So my mom decided to call the nurse and speak with her. She said it was a very pleasant conversation and my mom did mention the State Board of Nursing to her at some point. The nurse told my mom much more information than she told me (not about Jayden or his condition b/c of the HIPPA law) but about why she wanted me to call and schedule the EEG and who to call and that the Dr wants the EEG done asap. Then she told my mom to tell me that she apologizes if she made me feel uneasy or upset. I don't know what to even say to that. We will see if she treats us better at the next appt, which BTW, is not even scheduled. I will make sure to let the Dr know about the issues with the nurse b/c my mom thinks the Dr may not even be aware of the situation.
On a positive note, we took a 4 day trip to Panama City and Jayden didn't have a single seizure! We had a few "scares" where he would get over heated and we'd have to rush to get him cooled off, but he never had a seizure and we were are so grateful! He was even able to play and enjoy himself on the beach (we had to stay close to the water though). We are hoping for many more family vacations like that one :)
1 week ago