(Yes, I am aware that is a borderline inappropriate title, Mom.)
Hey, check out what Jane can do!
She took 14 mls yesterday from the bottle -- just about half an ounce. I like it. Nicely done, Jane and Angela!
Still snowed in, but it's supposed to let up by tomorrow morning. It darn well better. In the last seven days, I've been able to visit three times, and one of those times was the Annoyingest Wednesday Ever. That's an awful showing. That it's the weather's fault (we've gotten nearly a foot of snow so far this weekend) isn't making me feel better about it. But it sure makes me grateful for her primary nurses -- she's mostly had familiar faces around her while I've been stuck up north.
Okay, the ten-day forecast is looking promising: only one day has a 50% chance of snow, everything else is looking like 20-30%. I'll take it!
Jane's been a fussy little monster for Angela today, and with good reason. Her rectum prolapsed a little again last night, and she's just cranky, poor kid. So she's been getting a good bit of ativan and tylenol to try to get her more comfortable. They're supposed to wean the nitric down to 1 shortly, and already boosted her sildenafil in anticipation of the wean, but her Os are going up with her discomfort (she's at 60% now, but was in the 40s up until 3:00 when she pitched a fit and drove her Os up to 80). It may be time for a little vacation from the wean. But I bet they won't. Stay tuned...
4 comments:
Way to go, Jane! All that practice with the paci is paying off, eh?
Here's hoping that you two get a week full of excellent snuggling and Jane gets some relief from the prolapse thingie - sheesh!
I was wondering if you and Jane do some PT type stuff when you're visiting? Like pedaling her legs and moving her arms - does she pull on things yet or kick at them? Or does that mess up the breathing and stuff?
What about massage? I know massage relaxes me in ways that nothing else does - and perhaps some variation on a regular basis would help Jane too. (Maybe they're already doing that.)
Take care - and have a great week!
Cindy
We do try to do some PT when we play, including helping her roll over and positioning her so her back and neck are more flexed. She's been able to get down and play on the floor mat a few times (but feeling sick this last week has put the kibosh on a lot of that), and she does bat and occasionally kick at hanging toys. And her nurses, especially the night nurses, give her massages around bath time. And I do some massage-y stuff when she's in my lap. It's all obviously dependent on how she feels at the time.
We just put together a daily routine for Jane that incorporates all of these ideas so that everyone who has her, regardless of how familiar they are with her, know what to do with her.
A lot of her PT is really just desensitizing areas that have gotten the worst of the ICN -- her poor little feet (all those heel sticks to do blood gases), and her mouth in particular.
Good ideas/questions all, Cindy! Thanks!
Yes, I bet her little heels are sore. I remember my daughter Susan's were also, as she had to have daily heel sticks (by me - and I wasn't that great at it at first).
Jane is probably going to be thrilled when she realizes just how much she CAN do... even just realizing she can stretch her back and wriggle those toes and move her mouth and lips.
I would also guess that the more time you get to spend with her the more you'll be able to pick up her cues as to what "feeling good" means to her, not just what the numbers say.
We're going to be having Vermontish temperatures here in Florida with lows in the 20's and highs in the 40's. Brrrr! Drive safely and enjoy your baby.
Hugs,
Cindy
Ugh - winter is definitely here but I do hope it lets up so you can get back to see your sweet girl. We don't have very much accumulation of snow but it is bitterly cold and we've been getting flurries so the provinicial police just issued a statement asking people to stay off the roads because there have been soooo many accidents. Stay safe when you get out for the drive tomorrow!!
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