In September, when I spoke with Weslee's 'case manager' (main doctor contact) at the Cleveland Clinic about the results of his week-long stay in their EMU (epilepsy monitoring unit), I came away with more questions.
It all boils down to: what is our next step. Stick with what we are already doing, with meds and prayers, or (now, here is the tricky part), have another brain surgery (his 13th? 14th?) Not just any surgery. A 'SEEG'. This is the surgery (May 1 2019) that gave him a stroke, put him in a coma, and caused a whole lot of problems. The SEEG will give more in depth details about exactly where his seizures start, migrate to, and end...for each kind of seizure. To do that, once the electrodes are implanted directly into his brain, they will do lots of things to make him seize.
As a mom, I really REALLY hate watching that. He doesn't breathe, so turns blue sometimes. He loses control of his body... falling if not on a safe place, like a bed. And other things.
And chances are, another 1 to 3 surgeries will need to follow the SEEG, depending on what they find. Each surgery will require 2 to 3 visits (or stays) in the Clinic.
I asked the doc what he would do, expecting him to give a non-answer like doctors usually do.
Surgery. He said surgery/surgeries. Okay.... once I recovered my wits, he continued with a quick list, including getting guardianship ASAP.
Skipping ahead to ...
A few weeks ago, I finally met with a lawyer who specializes in guardianship cases. I took a copy of the POA that I had drawn up a few years ago. Once she read it, she told me that it was so thorough, we didn't need guardianship papers. Just file the POA with the courts. And she didn't charge me for the consult.
An honest lawyer. Color me amazed.
Meanwhile, this can be marked off of my list.
BTW, Weslee and I decided to go ahead with the surgery, which I will schedule as soon as I can get my vehicle working good enough for the long drives.
Approx 30 days after his 5/1/2019 stroke, I wheeled him to the cafeteria for a change of scenery and to practice feeding himself (incentive: pecan pie). Notice the very crooked smile.
No comments:
Post a Comment