Tuesday, September 29, 2009

Confessing

Confession: I've been a little cranky lately.  Jane's been doing great, but I'm hitting a wall. This frigging ICN. Everyone here is wonderful, the care's been fantastic, etc. etc., but I'm starting to have a hard time seeing all these babies born after Jane moving on so quickly. I know all too well that this is a long haul, and that recovering from BPD is a slow process we'll be dealing with for years, but I'd really really like to see Jane be able to do the simple things all these other babies can do. They get out of the isolettes! They move to other parts of the unit as they improve! And here we sit, stuck at bedspace 28, in a greenhouse Jane needs neither for heat nor humidity. It's just for the goddamned tubes for the oscillator.

In cute but alarming news, Jane is no longer allowed on her belly. Not for back-to-sleep training or anything remotely like that, but because she's now so strong that she can do a baby push-up and lift her head clear of the bed to try to turn her head to face the other way. An excellent way to dislodge the breathing apparatus keeping her alive. The night nurses had mentioned it over the weekend, but I pooh-poohed it, thinking they were exaggerating and nervous because they hadn't seen Jane recently. Oh, no, my friends. I saw it all yesterday. The kid is SCARY. I had to hold her head down until the respiratory therapist could come flip her over.

In excellent news, her oxygen got down to 42% this afternoon, and Awesome Resident Harriet was planning to adjust the pressure setting down a bit. The pressure is really what's holding us back -- Jane's been needing a lot to keep her lungs open. As soon as they can get the setting down to 14, they can put her on the conventional vent, and we will at last be free, FREE!, of the isolette. She was at 18 when I left for the day (she was at 22 or 23 on that wretched Labor Day); they take the setting down by .5 each time she's been stable long enough that they're comfortable with messing with her. I'd love it if she got to 14 next week. Ooh, please please pretty please!

2 comments:

artandsoul said...

Sending you some virtual hugs, and of course the prayers, and also encouragement to keep writing especially when you're hitting a wall. No need to entertain us or anything -- mostly its for you to vent, and share, and gather some strength!

The path Jane is on is unique and it really looks like a good arc ... she's moving in the right direction ... and I hope you see some of that movement real soon!

So, what's Sarah going to be for Halloween? Jane?

mommatosena said...

Hugs to you all! Its time for a hot soaking bath...with loads of bubbles...and if she isn't on her belly my guess is in a few days she will have figured out another way....