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January 7, 2014

Almost done with break…

They gave me all the pulmonary paperwork, results from the tests, etc. His MIP/MEP scores are weird. THe MEP is 32%, which is sucky von sucky, but at least it’s not changing from last time. But the MIP? WTF? It’s -24   — yeah, you read that right. Not sure how that shit works, but that’s the score he has. His FVC score also dropped by 10%. He’s now sitting around 65% for that. That’s the one that gives them a clear indicator of how he’s doing. At 50%, they want to talk about the rods in his back, and the gtube. I guess both are inevitable, but I’m still not ready to be having these conversations. Docs told us ongoing that they won’t discuss anything unless they think it’s within the two year window.

I guess we’ve hit that window. I hope to break the window. Or something. Just need to break something.

This adderal makes me violent. Just to MD, but still. I’m snotty with everyone else. But the school starting again makes me not give a shit about how I”m acting. As long as I get good grades. Not true, I do care, and I”ll talk it over with Janice when I go Thursday. I will I will.

I had a dream about Ian last night. That it was close to the end and I wouldn’t agree to take him off the machines. I couldn’t. The minute I did, his tiny little hands would turn cold. I wanted to hold his warm hand for as long as possible. THen I woke up and wanted to throw up.

THe palliative care nurse gave me her card and said to call her if I have trouble. I don’t like that. They’ve always been in the room, but they’ve never talked to us. Well, she asked if we had questions so long ago when we had our meeting with the docs. Makes me want to punch someone. But I won’t.

SOrry, my head is still wrapping around the appt.  Total mind fuck when you get the news flash that your son is still terminal, no matter how much praying and cussing and crying you do.

1 Comment »

  1. I don’t comment much, usually because I have nothing constructive to add.

    I’m one of those idiots who always wants to fix things and well..here all I can do is pray.

    So I’m out here, probably like a hell of a lot of others, praying our hearts out. Just wanted you to know that.

    I have a couple of books for Ian about having a tube. I’ve got them stashed away.They’re here if you ever need them.

    Much love and many prayers…

    Wendy | January 9, 2014 | 3:01 am

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