We finally got a call back from the neurology department early this morning.
Actually we got a call back from one of the nurses. She sounded livid. Apparently she'd left several e-mails and phone messages for Connor's neurologist, who hadn't answered her back. Keep in mind that this is now eleven days after Connor's seizures and seven days after his blood levels were drawn. So she forwarded everything to the department head and contacted the neurologist on call. "We will have a plan for you by the end of the day," she said, in a tone of voice that implied it would happen if she had to stand over the neurologist on call and threaten them with a Speculum of Death or something. I mentally cheered.
It's fantastic to have someone on the other end of the line going to bat for you in situations like this, and it was even more welcome because I had already used up all of my polite enquiry phone calls, and was planning on calling neurology later that day and upping the ante. You know, the "I have tried to Be Reasonable but now I am Very Upset and if I don't hear from someone today I will be Lodging a Complaint" sort of phone call. But luckily I didn't have to do that, because this awesome nurse did it for me.
So we got a call back this afternoon, and it was decided (by a different neurologist, as Connor's was still MIA) to up Connor's Trileptal by a substantial amount, as it still had some wiggle room. We have a neurologist appointment scheduled for June 11th, and they'll draw levels again at that appointment and make sure everything looks okay. I must say I'm relieved; knowing Connor's seizures are uncontrolled makes me just slightly paranoid, and if he even looks at me funny I convince myself he might have a seizure any second. So I'm happy that they've changed his meds and I can be a little less worried that I have a Seizure Jack-In-The-Box on my hands.
Whew!
~Jess
5 years ago
4 comments:
Its wonderful Connor has an extra advocate on his side. And at lease the department head now knows what's going on and maybe can reassign Connor to someone who wants to be more proactive in his care. Good luck!
Warning! Unsolicited Advice!!!: Get that nurse's name, thank the heck out of her and ask if you can call HER if you need help again. We had the same problem with Emmett's neurosurgeon not returning calls until I started leaving messages for his PA. She gets answers from the neurosurgeon right away and always returns calls the same day (imagine!)
I hope this new med dose does the trick!!!
-j o'c
Hurray for that nurse! (let the doctor fear the Speculum of Death)
Praying that the new level of meds does the trick,
Julie
What a great nurse! Hope the med changes do the trick - NO MORE SEIZURES!
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