Monday, October 19, 2009

Other Scary Words

It started out to be such a nice day, too. We discovered that my new-to-us car has satellite radio which WORKS. And I discovered that in addition to the awesome 80s station that lets me imagine I'm driving in a John Hughes movie, there is a BOOK channel. Audio books on the radio! Brilliant! Even better? The HARLEQUIN ROMANCE SHOW was on. No, really! To quote the great Patton Oswalt (if you don't know him, get yourself to YouTube NOW), what god did I please? Oh man, was that just the best thing ever to stumble across. I could recite along with the actor, that's how perfectly hilariously predictable the writing was. ("He crushed her to him, and brought his lips down on hers. His mouth was like a wild animal..." Ew!) AND it was sunny out, AND I got a great parking spot. Should have been such a good day.

But no. Jane had her umpteenth eye exam this afternoon and we learned she has progressed in her ROP. (Remember that boring post not too long ago about retinopathy of prematurity? No? Get out your notes.)

From her first exam, Jane had Stage 1 (that is to say, very mild) ROP. A few weeks later, we hit Stage 2 (still not so bad). Two weeks ago it seemed to go back to Stage 1 (yay!). Then last week it was Stage 2 again (oh), and now today we've got mild Stage 3 in one eye. Crap.

Dr. Brusque, without looking up from Jane's eyes at the end of the exam, announced to the room at large: "Looks like mild Stage 3 in one eye, no plus disease, non-threshold.  I'll be back Wednesday or Thursday." Wha? In American, that more or less means (any opthalmologists should stop reading here to avoid apoplexy) Jane's eyes are getting worse, but don't yet require surgical intervention and there's still a chance they could get better without it. And that he'll be back Wednesday or Thursday. ROP can progress quite rapidly, but they can halt it with LASER SURGERY. Which is amazing, but yikes. I wonder, if Jane does need it, do you think they could do a quick zip zip on my eyes, too? I'll save my glasses for Jane. She's gonna need 'em.

To add insult to freakout, Dr. Brusque was over two hours late for the exam so I didn't even get a chance to hold her today. I would say something very frank now about how I felt about that, but I have nieces and nephews reading this and I don't want to get in trouble with their parents.

Moving along. In non-scary news, the ventilator settings keep scooting down, and Jane's been putting up with it quite nicely. There's a whole new vocabulary to go with the nice new vent that I will NOT burden you with at the moment (you're welcome). For now, all you need to know is that one of the settings is the rate (the number of breaths the vent takes for Jane), which was at 40 when she started this new phase, and needs to get down to 20 to be extubated. She's at 34 today -- they're pretty much bumping her down by two points a day. A little quick math here... She could hit their numbers in seven days. Could. Hear that, Fates? C-O-U-L-D.

So, yeah. Not my favorite day lately, but far from the worst. I'm just going to hold Jane all day tomorrow and say disparaging things about Dr. Brusque to the nurses. Pththt!


annachorn said...

Hey Tia...Wonder on which planet Dr. Brusque attended medical school? I'm so sorry your days are sometimes as mercurial as N. E. weather (where we both live!). But, as you've unfortunately learned up close, as I did with my parents, medicine is often more art than science. When you get beyond the basics, it's open to those dreaded "opinions." And,I'm still looking for that proverbial crystal ball. You do the best you can. Educating yourself. Becoming an advocate. You and Tom have both done that in spades!!! And, it is truly amazing what the health care professionals have accomplished for Jane. Personally, I like the docs who are optimistic. I saw those beautiful pix yesterday, and it's quite obvious this little girl is going to have a very happy, successful life. You're undoubtedly going to be traversing some bumpy roads for the next year or two or three. But, I know you're both strong and committed to each other and to your family. And, I've never seen as much reason for hope as I saw in that gorgeous little baby's eyes. She's IS one tough little cookie, and I firmly believe she is going to do wonderful things with her life. And, I think Sarah is going to be right there along side her!!!! Love and prayers to all.

Rachel said...

I'm sure those weren't the words you were hoping for. But here's hoping that's all they lead to - more words. Besides, she's doing so great on the vent setting, that's got to help...

artandsoul said...

I wish there was a little thumbs up character or something just to say I hear you and wow. You also have some marvelous, wonderful and supportive friends so that is another blessing that is obvious in this blog!

Hope your all-day Jane-holding is as wonderful as it sounds.