Josh has been sleeping for most of the day, but appears to be recovering well. He got up and out of bed at about 3 p.m., only a few hours after surgery. He has been out of bed three or four times and ate something light at about 6 p.m. He got morphine twice for the pain and Percoset once. At its worst, the pain has been a 9 on a scale of 1 to 10, he said.
We are counting down the days here in the big city of New York and our little city, a.k.a. the NYU Medical Center. We have spent most of the month of May here, getting to know the nurses and staff, making friends with fellow patients and families, and establishing routines for our long days.
The outside world is celebrating Memorial Day weekend, but the thought of barbecues and beaches and leisure is so distant to me. We are all very much looking forward to going home and the simple pleasures of sleeping in our beds and showering in our own bathroom and eating a home cooked meal in our own kitchen. At the same time, we will be facing many challenges -- both old and new -- and the thought of some of these challenges gives me a pit in my stomach.
So what is the next step for Josh and his Epilepsy? I think we all need to go home and process all that we have just been through before we make any decisions. We will look at all of our options and move forward from there. We have promised Josh that we will never give up looking for a cure or treatment for his seizures. And I will never stop praying for Josh to be seizure-free, in good health, and driving a car.
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I have a son with persistent seizures and have been following your journey. I'm sorry you have not found the answers yet for your son. After such an investment of time and effort, it is natural to need time to regroup. I like how you say you will never give up looking for a cure or a treatment for your son's seizures. I too am never going to give up. Persistence will win!! Best of luck to you.
ReplyDeleteJerry, Robyn, & Josh -
ReplyDeleteWe share your frustration, and disappointment that this year's medical odyssey didn't find a 'silver bullet' to stop the seizures once and for all. I admire you for your commitment to never give up, despite this setback.
Renee Mesh used to ask Christian, "How do you eat an elephant?" One bite at a time. I guess this epilepsy elephant has some more bites left to go. :-) Just keep your focus on the long-term goal, and take care of the short-term problems one at a time, as best you can. Your friends here in Burnt Hills share your anguish. We support you, and stand ready to help however we can. Just let us know how and when.
I look forward to the day when the elephant has been eaten, and you can all move on to dessert! Our thoughts, prayers, and best wishes are with you.
- Mark & Jill Bechard