So sorry to have been out of touch. We've been desperately trying to find which way is up. Earlier this week, Matthew was sent home from school with a high fever. We got the lovely "its a virus" diagnosis from the pediatrician. He slept roughly for the next 2 nights, but things finally broke and he was happy again... just in time for Will to catch the fever. And unfortunately with fevers come seizures... so we've been fending off a fair number of those as well. As Will was sleeping off his fever and seizure one morning, we got a call that Luke also had a high fever and needed to come home. There's joy in numbers I suppose.
We met again with Will's neurologist because his current slew of epilepsy drugs just aren't working. The doctor added phenobarbital, which has been around and used in neurology since 1918. Oldie but a goodie... except that it takes the body a while to get used to and for the first couple of days, Will was very sleepy and cranky. We'll be decreasing one of Will's other medications at the same time as we increase the dosage of the phenobarb... dancing the dance and paying close attention to the taper schedule.
Finally now the fevers are gone. The headache, reactive lymph nodes and neck pain that I wrote about having myself have not subsided, and after a long course of antibiotics for a sinus infection, I was sent for a CT scan. I come from a long and distinguished line of hypochondriacs, so in the time between when my doctor prescribed the CT and when I actually got it, I had WebMD'd myself into believing I either had lymphoma, lupus or tumors near my ear. The CT actually revealed that I continue to have a severe sinus infection, which is causing the lymph nodes to react, which are causing my neck pain. So I'll be checking into the ENT this week, likely following in Will's brave surgery footsteps.
Nate has managed to keep it all together... though at times I am sure it felt as though there were several shoes dropping. It seemed as though the week would never end. I know myself, I had moments where I asked "why so many tests (not medical tests, tests of grit and perseverence)?" and "do these trials always have to come lumped together like this?"
But hey, here we are. We survived. We went through several bottles of Tylenol and Advil and nasal saline and vials of Diastat. We put many miles on the van between trips to the pediatrician and the neurologist and the pharmacy and the radiology center and every school. And thankfully for the past two nights, everyone has slept. We've been to bed early and slept to a **mostly** normal time in the morning. We're trying to heal those immune systems as best we can, and aid Will's body to accept this new medication and fend off seizures.
Thanks for your patience during this time. For this typically active family, two weekend back to back at home with little planned... with being sick and tired on top of that... has left us looking forward to getting back to normal this week.
Talk to you soon,
Down and Out but Looking Up in NC