So here we are, back in NYU Langone - AGAIN! Sheesh. Poor Byron. Poor us :)
Nice view through:
Here is what is happening now. Yesterday morning Byron took a test at school. When he got home he was in excruciating pain (in his head). I reached out to the Neurosurgeon via the patient portal to see if there was any way to see someone as an outpatient i.e. to not go to the emergency room. Her response was "Please come to the emergency room now, we will let them know you are coming." The drive to the emergency room was very hard for Byron. He vomited as soon as we got to the hospital.
This is a kid who has been through two major brain surgeries with basically just Tylenol for meds after the first 48 hours. He has a high tolerance for pain. He was back in school a month after the last surgery, full time with college courses.
But this shunt placement surgery has fundamentally changed how Byron acts, feels, looks, tolerates stress etc. He has a hard time reading anything and is constantly tired. And now we must get to the bottom of these headaches. He's usually fine in the morning and then devolves through the day.
He has had several tests so far. One showed that the shunt might not be draining enough so they adjusted that. Just as an experiment Byron took an online test that was due today and so far no headache so that is good news. But the doctors really don't know what is happening. They are conferring this morning and they will come speak to us soon. I told them that what we need now is the "why" the headaches are happening, and a pain management protocol for when they do happen. When we got here they had him on something called Toradol which really cut the headaches almost immediately. But you can't use that at home apparently.
More soon I'm sure
Sending love and prayers. 💕💕💕 i’m envisioning them figuring it out. Byron the Brave - hang in there dear one.
ReplyDeleteYes, Toradol is amazing. Straight-up erases pain. One shot can last a couple of days. If there's a local urgent care center, they might be able to inject it on a clinic basis.
ReplyDeleteCan mess with the tummy, though, so not a great long-term solution for everything.
I really hope things get better. Byron, please feel free to call or message me on GChat if you ever want to just vent or talk things through or just chill or ANYTHING. I know your migraines are much worse than mine, but if chatting with a fellow migraine-head to talk through what helps is useful, I hope you know I'm here.