And so, we wait.
Tom talked to Dr. Boston today, and it looks like Jane will be going down midweek next week. And that's pretty much all we've got for the time being. Oh, also he confirmed Jane is expected to be in Boston for just a short while -- long enough for the docs to assess her and test her and figure out what's making her tick. Then back north for the usual suspects to implement the new plan. Oh, lord, I just realized this is all just going to result in yet another plan. Wouldn't it be nice if it were a plan that we could stick to for longer than a week, and that would, you know, work?
Eh, all that crap can wait. Jane had another good day. (Bess clearly needs to come back soon -- Jane was totally showing off for her.) She had two good play times (naturally, my phone was across the room), and she nursed for nearly half an hour, and she got in some good sleep (had my phone for that: see below).
(What is she dreaming about here? Typing? Drying a manicure? Tickling the ivories? Spirit fingers?)
The only thing bugging me about her at the moment is her oxygen support. It's gotten pretty high. They can get her down into the high 40s and 50s during a sound sleep, but she's consistently in the 60s when awake, and regularly needs 80-100% oxygen when she gets upset (and when she poops, and when she desats, and during her trach tie change today, and...) Today was the first day back to the lower steroid level, but it wouldn't make sense for that to be it, since she's been needing the support for a few days now. So, what? Should they up the vent settings? Take the nitric to 20? Burn sage and consult the oracle?
The team is reluctant to make changes before the transfer. I mean, obviously they don't want to mess around much, but I wish... Oh, hell, you all know what I wish. Fix baby, bring her home, etc. Something quick and easy for a change. But that doesn't seem to be on the menu.
And so, we wait.
4 comments:
Hugs Tia. Waiting is always the hardest. I can totally empathize with what must be racing through your heads. I aint got no platitudes...it sucks. We all pray for fix baby, get her home; quick and easy. Mid week can't come fast enough. The pics are great an she looks very contented while she was resting; I think she was piano jamming with Ben Folds. Prayers of patience.
Fix baby, get her home, quick and easy.
Fix baby, get her home, quick and easy.
Fix baby, get her home, quick and easy.
I'm going for it - full force. Candles, sage, oracles. Rosaries. Prayer chains. Whatever I can muster.
Fix baby, get her home, quick and easy.
The pictures are beautiful - she does look peaceful and content. I think she looks like she is blogging!! In her sleep!
Hugs - and wishes for peace and simplicity.
Cindy
Don't you worry, Dr. Boston will fix her up :-) They will do the test and if it's something they can fix, by golly they will fix her. We went through the same waiting game, it was frustrating. It was a wednesday evening when everything crashed and they didn't want to change a thing on our little guy till the transfer, just to keep him stable. That was an entire week! It felt like a month to us, each day dragged on with 'sitting and waiting'. But boy once your little girl gets here it will be fast pace for sure. We were so amazed at how fast they get things done and get answers.
I will see you next week in the NICU of Childrens :-)
There are so many over-the-stop melting-inducing photos of Jane, but the piano-playing/manicure/blogging (!) one is over the top.
Jane-y--see you--meet you!--in Boston...
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