So, finally, after exactly 2 LONG months of having no neurologist at all for Jayden, he had his appointment with the new one over at Children's hospital. Of course, it wasn't smooth sailing, although I'm beginning to believe it's some sort of Johnson family omen. Or perhaps the devil trying to see just how hard I am willing to fight for my son. Long story short, Jayden's Tricare referral got lost in the shuffle of paperwork and daily faxes. New Orleans is very low on pediatric neurologists so the offices are jam packed. That's when you have to depend on those computer systems. However, in order to depend on one, you gotta know how to USE one! The receptionist at the neurology clinic asked me to call the general pedi to get it faxed over. The nurse over at the pedi's office couldn't locate the referral for the Dr we were scheduled to see. Instead of returning my call, she just didn't do anything. I called twice and the receptionist called the 3rd time. Still no referral. The neuro nurse called and the nurse at the pediatrician's office told her that we didn't have a referral to see Dr. C, it was for another Dr. So the nurse came out and told us that we were scheduled to see the wrong Dr and that we'd have to see Dr. M next week. Oh hell no!! See, we were scheduled all along to see Dr. M this morning at 10am. When Jayden was discharged from the hospital last week, we rec'd a call from the clinic stating that we should not come to the appt to see Dr. M at 10 and instead take him to the Metairie clinic to see Dr. C at 2pm. I immediately called the general pediatrician's office to check on the referral and she checked the system and saw that he did indeed have a referral to see Dr. C and she faxed it over that same day. That's the referral that was lost somewhere. So I pitched a fit. How dare they even think of sending us home to wait ANOTHER 7 DAYS to get my son seen b/c of a mistake someone in their office made. I understand that the nurse and the office manager's hands were tied, but unfortunately, they had to be a sounding board. I actually had to just say "Let me walk out of here before I go to jail." b/c I seriously felt like punching something. I snatched my cell phone and called the pediatrician's office and demanded to speak to the nurse. The receptionist said she could take a message but I said "No. I've left 3 messages and now the neurologist is about to cancel my child's appointment. I need the nurse on the phone now." I was put on hold for about 3 minutes and then the receptionist comes back on the phone and says she has a referral for Dr M. I said, he also has another referral which is for Dr. C. She goes through it again and says she sees one for Dr. A. No, that's the Dr who we are no longer seeing. She looked again and said "OH!! HERE IT IS!" OMG. I headed back inside and asked that receptionist to grab the nurse and they hounded the fax machine and finally, at 3:45 (his appointment was scheduled for 2), the referral came through. Lord...
So, anyway, I walked in there feeling bad about the way I had to act in order to get him seen, but hey at least he was finally being seen. And the best thing about it all...Dr. C was totally worth the wait. Yeah, I know I could possibly be jumping the gun, but I had a bad taste in my mouth for the previous neurologist from the very first visit and less than a week later we were looking for a new neurologist. Dr. C apologized for the referral issue and went to work getting Jayden's history and the names of the medications that he has tried and the ones that didn't work for him at all. The Dr told us that there are still several medications available that we can try him on (which was a relief b/c the last Dr told us that his chances of having his seizures medically controlled were slim...ugh)and we still have several options before having to pursue surgical options. She wants him to have a 24 hour video EEG done soon. She's adjusting his medication and going to attempt to eliminate the ones that he's taking that are simply not helping at all. We discussed the benefits of a vagus nerve stimulator so that we will know that it's definitely an option for Jayden should the medications not work for him. She told us "We are not going to give up on him. We will stop the seizures or work on reducing the frequency b/c it CAN be done, we just have to figure out how."
Before we left, she gave me her PERSONAL email address b/c she simply does not rely 100% on her office staff b/c they are not 100% reliable (example #1, the referral.) She wants me to keep in touch with her via email while he's weaning on to the new medication and to keep her posted on any abnormal reactions. She told me that her emails go straight to her phone and she checks it often. That is so very reassuring to me, you have no idea. She recently completed her residency over at Tulane so she worked with Dr. Nelson (our 1st WONDERFUL neurologist who relocated) and his wonderful nurse Marc and she mentioned how much she misses Marc b/c he was an excellent nurse. To which I agreed! I still call Marc when our backs are up against the wall and even though Jayden isn't his patient anymore, he does what he can to help! I told her I believe Marc spoiled the both of us, lol! Before we left, I apologized to the nurse once again about getting so upset in the waiting room and both she and the Dr chimed in and said "Oh don't be sorry!! That's your son and you are going to fight for him no matter what. We understand." Thank you Lord. I needed to hear that SOMEONE understands b/c for 4 long months we dealt with a Dr that simply did not understand and didn't care to try and understand. I'm so glad we are starting the new year with a new Dr and a new outlook.
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