back again

We are back at Barbara Bush again. She has been presenting signs of rigidity all this week. We had been giving her Diazepam. She'd  come out of it, but the next day, we'd be right back where we started. Unfortunately,  last night , it got worse. Of course, sure enough,  I get another call saying Cady's hands are acting up again. She almost made it a whole day this time. Our youngest, Addy, came home from school with Strep throat so i picked  her up. 

I drove home from work afraid, angry, and sobbing my heart out. I could feel way deep down that something terrible would happen.  We sat around the ER waiting for a room upstairs for 4 hours (not like the previous 12 hours from two weeks ago). She has tested negative for Strep throat and the flu. While this is great news, it doesn't  point us to a glaringly obvious diagnosis.

She is heavily medicated and miserable. The ususal cocktail isn't working, which is incredibly  frustrating. The docs are trying Phosphenytoin to see if that works. If it does, it is similar to Trileptal, and she needs to be put back on that. Maybe it was working after all. My suspicions about the Acetozolemide still stand. She hasn't been herself lately and that may be the culprit. Or one of many. 

Her sister is with my parents right now. She is very sick with a very high fever, but she's on Amoxcillin and sleeping it off. We miss her terribly, Cady most of all. They hate to be apart. Addy hates to see Cady go through this painful stuff all the time. I love them both so much it kills me.

The Phosphenytoin has her sleeping now.

I have no idea what is going to happen. Every time it does, I imagine the worst possible outcome.  She had a chest x-ray, urinalysis, bloodwork for CPK levels. Everything.  There is no sign of a bacterial infection. It could be an undetected virus. I don't know, and I'm getting damn tired of it.

Every time we wind up in the hospital, I wonder if this is the "BIG ONE". I wondered if these events are just leading to a much larger problem. I wonder if every time she says "I love you" it might be the last time. Keep your loved ones close and be thankful that you have what you have. 

Yet again we are in the middle of a snowstorm. I hope my bad feeling is just a feeling and not reality. Thanks very much for all the love and support.  As always, we'll keep you posted.