Friday, January 15, 2010


Friends, I'm delighted to report that BOTH girls are apparently on the mend. Sarah may have kicked the fever that's been keeping me here with her, and Jane seems to be slowly turning the corner.

Let's see. Where to begin? How 'bout I just try to summarize? Jane had her echocardiogram today. The preliminary read is showing no worsening of the pulmonary hypertension (yay!) but we have to wait to see if it gave any evidence either way with regard to the PDA (boo!). It also showed that she didn't have something called a tricuspid jet (yay!) which is blood flowing backward and is caused by increased pressure on the tricuspid valve (which is between the right atrium and the right ventricle -- that ventricle is the chamber that has thickened in response to Jane's hypertension), but this means they can't use the jet to measure the pressure in her heart so they're probably going to use a cardiac catheter to see exactly what's going on in there (yeesh!).

She's still under the paralytic, but they're hoping to take her off it tomorrow morning, if she has a good night and her oxygen stays around the 60% level it's been at when she isn't agitated or undergoing a procedure.

The GI folks are going to be coming in to check out her system. In fact, maybe they already have. I can't remember for sure. I need to start taking notes when I'm on the phone with these people -- there's too much information for my squishy brain to retain. Anyway, they're all curious about that prolapse.

And immunology is being consulted with regard to the loose poops she's been having for, what?, almost three months as well as the thrush-y looking situation on her tongue that's been lingering for at least as long.

So, I have to tell you guys this wacky thing they do to Jane. Back north, they suctioned Jane whenever she seemed to need it -- mostly when you could feel or hear secretions rattling around in her chest or in the trach. Down here, and I think it's because she's been kicking up so much gross junk lately, they do this wild suctioning they call "pulmonary toilet cleaning". For real! They do it every three hours, and it involves giving her a nebulizer treatment, shaking her chest to loosen up the crap and then running a catheter (coated with lidocaine) into her lungs to vacuum it up. So gross, and yet kinda cool, right? Right? Am I alone in this?

So, that's basically it. If Jane comes off the paralytic they'll be able to restart her feeds (she's on an IV right now) but they're thinking about putting in a different line from the NG tube we've all grown used to. What they're considering is an NJ tube, which just gets the milk deeper into her system so she can't spit any of it up and accidentally aspirate some of it.

Okay, so that's it. Tom's coming down tomorrow, and maybe I'll finally get a chance to see our girl!

And thanks, everyone, for all of the concern and encouragement and love. I keep hearing about all of these people, all over the country -- hell, all over the English-speaking world -- who are pulling for Jane. It chokes me up whenever I think about it. So quit it! Quit trying to make me cry, you amazing cheerleaders! Sheesh.


Meredith said...

OK, we'll stop it. Um, tomorrow.

(Very quietly) Gooooooooooooooooo Jane!

Smooches. Glad to hear Jane's getting so much looking-at done by so many smart people, and that you're feeling like you're getting somewhere (even if that place isn't altogether clear yet), and that Tom's coming tomorrow and you'll maybe probably hopefully get to see your girl.

Take care. Thinking of all of you!

mommatosena said...

I ain't stopping for nothin'!!! Squishy brain is an understatement! The information that you have written for us to follow along is overwhelming and the fact that you can explain well it's awesome....just like you girls! SOOO Glad she is in Boston and that Tom is making the journey down for a visit! I am with ya on the coolie oolie of a pulmonary toilet cleaning! Enjoy your visit and make sure to get pics cause I have to tell you there is a bit of withdrawl going on here with no sweetness to feast on!! Continued prayers for clarity strength and healing for all of you!

artandsoul said...

Hey, I could have used some of that "toilet cleaning" last week when I had a cold!! It does sound neat ... in a "being-totally-obsessed-by-medial-phenomena" kind of way!! I bet that helps her breathe a lot better, and I'm all for that!

Thrilled here to hear that Tom is heading to Bahston, and I'm sending extra sage, incense and prayers that you'll get some good time in with Our Girl Jane tomorrow! As well as some nice time to relax with Sarah and Tom too! Families are amazingly resilient, aren't they?

Sorry if we're making you cry. Um well, not exactly sorry. But I have developed a whole set of "Jane Muscles" and they include pulling very hard for that precious girl of yours.

So, it's continuing down here in rainy No. Florida!