Tuesday, January 5, 2010

News! Get Yer News Here!

Awesome Friend Bess is in the house!

Peeps, my friend Bess drove all the way from New York City to visit our girl in the hospital. The last time I saw her? Was when she drove all the way from New York City this summer to visit me in the hospital, three days (as it turned out) before Jane was born. That's a damn good friend.

Not long before Bess arrived I spoke with Dr. Congenial, and the consensus: BOSTON. It's ON.

(I don't know what's going to happen next time Bess visits -- the whole family moves to Belize? We win the lottery? I mean, Bess arrives and big things happen. I'm just sayin'.)

Just, what, four days ago (is that when Friday was?) a transfer seemed off the table. No more. From what Dr. Congenial told us, it was not a unanimous decision, but it was a majority decision. The way he put it is that *he* doesn't think there'll be a good outcome (oh, these goddamned euphemisms -- but I'm NOT going to interpret because I don't want to say it and don't agree anyway) unless they transfer her -- I don't know what the rest of the team thinks. But the decision has been made. All that remains is to coordinate things with the other hospital so that Dr. Boston is around (hmm -- he's going to need a new name, seeing as how they'll all be Boston doctors) and the staff he wants on is on. And all that sort of thing.

Guess it'll be sometime next week. Jane's doing better today, so there's no need to rush things.

And, yes, Jane was definitely doing better today. The nitric seemed to be the thing. She was much happier today, much more herself. She was alert and interactive in a way she hasn't been in a few days. Her oxygen is still a little higher (mostly in the 50s and 60s), but she had a crappy couple of days. It's going to take a while for her to completely recover, I would think. We did try to breastfeed for a bit, but that was a fail. She just couldn't quite settle even though she was sort of interested. Hopefully it'll go better tomorrow.

So, yeah. Transfer. I wish I could say it was going to happen on X date and last so long, but we don't know a thing yet. It may be a consult, it may be a longer term transfer. And I don't expect we'll have any answers until after she's been down there for a while. Stay tuned.

In the meantime, we need to figure out how to get Jane's posse down there with her. I wonder if the new hospital needs six temporary nurses in the NICU...


artandsoul said...

Okay...well, that sounds like a plan! Do you have family in Boston? Peeps to crash with? Have you looked in to Ronald McDonald House? They provide free(?) housing to families of children in the hospital ... with regular bedrooms and home-cooked food. JOY!

Slow and steady sounds good, as you all move toward the next phase of Life With Jane!

Your friend Bess is, indeed, awesome! And LUCKY!! The two of them look nicely snuggled in on this wintry day.

Here is where you stretch those "asking-for-help" muscles and it can hurt and seem impossible, but honestly its good for you (and for everyone else too).

This far away I am afraid I'll have to stick with prayers. But I'll be faithfully following your caravan of progress!

Hugs -


tia said...

My sister's just south of the city and my mom's just an hour south of *her*, so I'll be camping out there for the time being. Tom's sisters are north of the city, and I have assorted friends in the surrounding area, so it's not as completely overwhelming a situation as it would otherwise be. I'll be working those ask-for-help muscles PLENTY.

artandsoul said...

That is wonderful! When we were at Shands I was alone ... with my babies 3 1/2 hours away! Terrible - but what did I know at the time?

Lots of deep breaths!

(Oh, do you have a laptop?? Or should I start the wean now?)

tia said...

God, that must have been awful for you. No, I've got my laptop fired up
and ready to go (it's what I usually blog from). No weaning on this end of the operation!

Karen said...

Wow...mixed bag here. I'm glad Jane is going to get the best possible help she can get but sorry this is going to add more stress to your balancing act of mothering both girls! Wish I didn't live so far away as I'm sure Andrew and Sarah would love to play together and we could have lots of playdates!! Good luck with everything, Tia.

artandsoul said...

At the time it wasn't awful or good - it was just the next thing in front of me. The cancer and the complications were huge, and that preoccupied my mind. Later, as it was all turning out okay I had a slow dawning realization of what-the-heck-just-happened? and over time I've realized that it was quite stressful. To say the least.

One day you'll be really glad you have this blog - because believe it or not, as focused on all the details as you are in this moment - you will forget most of it, and be grateful to have a record of what actually happened!

Not to mention the cache of precious pictures!

Yay for laptops!

mommatosena said...

I am thrilled that you are all headed to Boston I must say...not that your team isn't awesome....but I get a sense that there is something to be gained for Jane there. You seem to have plenty of places to stay and a large network of support and that too is awesome for Jane and I am assuming that Sarah will go with....YEAH Bess for the trip and safe travels!

Anonymous said...

Tia -- Let me know if any of us here at the College can help in any way. We'll be thinking of you and Jane! --Kelley

Jessica said...

Don't worry Tia, we have found our new team of nurses remind us so much of our team up there. Our lead nurse is so much like our head primarys (Sarah and Deb). Things are a little different here but once your here I can help you out. One thing is that they have a rule right now that no siblings under 18 are allowed in the NICU :-( Even mayra can't go in to see her brother, which means poor little Sarah can't go in to see Jane. They do have a family room with tons of toys just outside the NICU entrance. If you need a place to stay and a carpool buddy feel free to ask :-) We only live 45 minutes away and I work 15 minutes away from Childrens.
Don't be scared, Jane will do great here! Once she heals she will be sent back to DHMC to finish off her healing and go home. We stayed down here as it's closer to home. Once Jane arrives they will do a few tests and consult with the group, it took a week and half before Jacob's surgery was scheduled as they ran tests.