Yes, I am sure there is a more PC way of saying it but, in reality they are just awful. I don't care who you are. Perhaps you've sat with a neurologist as a patient, a parent or a caregiver. Perhaps you've been lucky to not have to be in that situation. I'll just warn you now. A neurology appointment never seems to end with puppies and rainbows. More often then not you'll leave feeling defeated and that skip you had in your step will be squashed.
The funny thing is that Riley's neurologist is a fellow who started his fellowship weeks before Riley landed at CHOC. He's around my age +/- a few years and we get along. He's quirky in a good way. He talks to himself. We actually like this about him. He reminded me today that it was just the way he is. Promised me he isn't crazy. I know that. We know that. The bottom line is he is a neurologist, he picks up on any little idiosyncrasy even if it is just a normal thing for your kid to do. He stresses me out!
We started off the appointment a tad chaotic as I pulled in to the wrong parking lot and forgot where we were going. By now you'd thing I knew what I was doing. Well sometimes I just don't! Thankfully by the time we got to the appointment 10 minutes late I realized the doctors weren't even in the building! 10 minutes later they walked through the door so I knew our appointment wouldn't be bumped. I guess lunch ran long? + 1 for mommy!
Riley was weighed and measured. Almost 24 lbs and 30 1/2 inches and then we waited and waited and waited. I had Riley's nurse hold off on her feed for fear she'd puke on the doctor and the longer we waited the more annoyed Riley became.
I went over all that Riley has been doing with the doctor and he was thrilled. And then she started the startle/mad motion. It's something we've learned that she does when she is unsure about someone, mad or just waking up. Well she did it twice and he paused both times to take note. And then he left the room.
He came back with the attending/senior doctor and the first words out of that doctors mouth were you need to go to the ER. Cue crocodile sized tears in my eyes. Really..... I then asked what they would do in the ER and reminded him we had Ativan at home and basically gave him the look that said a trip to the ER is not going to do any good for Riley... and you know it. Without me having to say anything he recommended that we just head home, give Riley Ativan, get a script for something stronger just in case and return to the ER if we notice any extreme seizures lasting longer then 5 minutes. I was numb. Truly not what I expected.
So we now have an EEG to schedule, phenobarbital levels to be checked and nerves that are wrecked. I asked him flat out whether these type of seizures would cause any new damage and he reassured me that they wouldn't. Now we wait and follow up with him in a month. And all of the brag book milestones I was rattling off are probably lost amongst his "other" notes.
We left to head back to our car and I was sad. As we got back to the CHOC valet I heard "hey what is Riley doing here?" and turned around to see Dr. Irwin. If you don't recall we love her!
We had a brief chat about our visit and I will only say that I left feeling a 100% better. It's weird but, how did we cross paths at that exact time? I think that out of all of Riley's doctors Dr. Irwin knows her better then any other doctor. There is a difference between seeing a patient once every 3 months and spending 65+ days rounding on a patient. Period.
So we wait. Today stunk. Riley still rocks. And she could really use your good thoughts and prayers!
Fight on!
Love,
Dave, Megan , Logan, Mason and Courageous Riley!
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