The seizures continue, although Hope is now eating from a bottle more consistently and we see an occasional smile. We met with the doctors and case-coordinators today to make a plan for Hope. Basically, I have to stop thinking that I have any control what-so-ever in regards to the seizures. She's going to have them and I have to stop worrying about what I'm supposed to do about it.
You may think we were already at that point. But when you see her come out of an extremely bad episode and start smiling and cooing again, one can't help but want to do more to keep her with us. Unfortunately, there isn't much to do, so it really is time to let go and let her be as she is. We're still aiming for comfort care, which still means trying to stop the seizures but I can stop charting every second, and stop wondering if we should bring her into hospital or call the doctors again. This should be a relief, but I just feel like I have to resign myself to watching her deteriorate. Not an easy thing to accept.
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