Sunday, November 1, 2009

Jane the Pain

Gah. Someone else should have worn the skunk yesterday. Jane's been a bit of a stinker lately. Her oxygen has been creeping upward and it's starting to piss me off. Not Jane. Just the situation.

Seems that all the various changes to the vent and nitric are taking their toll. Jane was in the 30s before she came off the oscillator, in the 40s before they tried to get her off the nitric, in the 50s as they started messing with the vent settings, and she's been in the 60s lately (got up to 70% today). I'm not digging it. Awesome Nurse Meg was reassuring in that she didn't think we were headed back toward 100%, but the trend hasn't been great. 

Tom was down at the hospital solo today, and it was Not. Fun. Jane didn't want to be held. Didn't like her tunes. Didn't want to settle down. Poor Tom and Meg patted her tummy for like an hour trying to simulate the shaking of the oscillator, and I think that was what finally helped calm her. Her heart was racing, her respiratory rate was high, her oxygen was up. But Meg did call us at 5:30 this evening (which got my heart racing before she told me what was up) to say that she was finally resting, her heart rate and breathing had both calmed down, and her oxygen was down to 61%, all of which was reassuring both to Meg and to us.

So, with that lung lobe thing. The solution, for now, is to keep Jane on her right side for two-thirds of the time. This has her facing away from the machines, so there are tubes draped over and around her like bunting.

Hey, it's almost festive!

But the cuteness continues. Jane practices pinky swears with her paraphernalia.

Tom tried to get all artsy with this one: Jane in her beloved mirror.

I don't know, peeps. I'm not discouraged, but I'm sure as hell not psyched. I trust that this is just yet another annoying bump in the BPD road, but I'd gotten kinda used to that comfortable place we'd reached a few weeks back. I know they have to challenge Jane to get her off these machines, and it's all to the good when you take the long view, but I'm fairly myopic. Short-sightedness got me through bedrest and the really tough days when Jane was at her sickest. Guess it's time to change my strategy, but I DON'T WANNA.


mommatosena said...

HUGS! I don't think there is anything more I can offer, well ofcourse prayers but yeah this is the crappy part. Just when things seems mentally manageable and you can embrace all the craziness; stay with whatever works...I find that dishes bought at goodwill and thrown to make loud smashing noises works wonders!!

artandsoul said...

I hear you! And hey, if you can't vent here then where can you?? Having moments of being "not psyched" is perfectly normal, and probably part of the whole situation ... sort of like a rest or plateau for your enthusiasm.

What's good is still good. And Jane is incredibly strong and vibrant ... and WAAAY cute! So, mom, you just coast for a bit (emotionally) and let the nurses, RTs, praying friends etc carry along... sounds like Jane is already there.

Sending you hugs...