Jul 2, 2010
This trip was a lot less hectic than usual for a lot of reasons. We knew it was coming 24 hours ahead so I had time to pack, plan, get the kids squared away (versus the usual of "You're staying" and then the mad scramble). It was also easier because he isn't truly "sick", it was for a test so they acted differently to us. Finally (and this is huge), because he was on "Long Term Monitoring" ... they weren't allowed to disturb us in the night! (Versus the usual endless trail of people every hour or so.)
I also felt more "relaxed" once he had his episode and I knew they were watching and recording. That we were closer to answers. And I just had to wait for the diagnosis.
At 8am, the Neurologist came in with the news, "No seizures". I never thought it was, but many, many specialists had seen his episode and thought it was. Why does it matter? They're getting closer together, longer in duration and more intense. AND, seizures are the "end stage" of Leukodystrophy.
So what IS it? We need to find out and soon as these episodes are bad enough to cut off his oxygen and he desaturates and he could die during one. So we need to find out what is causing them. GI? Respiratory? Other?
As I drove home, I thought to call the Hospice staff. The Hospice Doc saw him after the episode yesterday and the Hospice nurse saw him during one a few days ago. Maybe we can figure out our next steps. Which specialists to see next? Tests? So that will consume our next few weeks I'm guessing.
Later I'll have to blog about the people we ran into while at the hospital ... little "clues" of why we're on this journey. But for now, Manny just woke up and I'd rather play with him. Time well spent.