What, done so soon?

Hello there,

Karee is still sleeping off the anesthesia as I write this, but she's doing so in the comfort of her own bed.  A very welcome place to be!

So the quick story is that today was a very good day!  They don't know exactly why, (really, they don't have any freakin' clue why!) but her stenosis is much much better.  When last her stenosis was examined, it was red and ugly, and blocked 40-50% of her airflow.  They expected that it would recede some, as that is normal scar tissue behavior.  They did NOT expect it to recede as far as it has.  Karee has about 90% of a normal airflow, which is an absolute home run for her according to the doctors.  We even have pretty pictures to prove it!

Ideally the above opening would be a perfect circle. The stenosis is the crescent kinda shaped tissue from about 4:00 on the lower right to 9:00 on the middle left.  Notice however, beyond that, a huge opening into the trachea and beyond.  Yay!  Plus, the tissue looks healthy, or "quiet" as we've come to think of it.  They weren't really sure what that white 'zit-like' thing is, but they weren't worried about it.

Now, I can't guess at how far across that is(appreciate that this photo is a hefty magnification of the real thing), but for perspective keep in mind that when the stenosis was first discovered, it left only a 6 milimeter opening at this point.  I would guess this is 12-15mm across?  I dunno (somehow tracheal diameters were only glossed over while doing my master's degree in music - I want my money back!) but it's waaaaay bigger than it was, and it's absolutely a healthy size.  Boo Yah!

As for the bronchials, well, the good news just keeps coming.  Going in we didn't know if we'd see angry tissue (it was pretty darned angry last time we looked) or even worse, new web scarring over the entry to either bronchus.  The pictures I was given are not as large so after scanning it's a bit blurry, but it's still worth pretty close to a thousand words...

What we can see here is an absolute absence of new scarring (yay!) which is a big deal.  The tissue at the top is still angry, but not as angry as it was.  They did not try to pick anything away, to allow healing in progress to continue.  They also explored further into the lungs and for once, they saw nothing exciting.  Woohoo!  As I've mentioned before, we don't want to be interesting/intriguing any more.

So, the docs in question are really really pleased with what they see.  At this point, there's no need for surgery (no need to "heal with steal"!) and we certainly hope it stays this way.  The entire episode remains, in doctor lingo, "idiopathic".  "Idiopathic," I have been instructed, means, technically "we have no idea what the &!@$% is causing this." We would rather know what happened, but we're pretty at peace with knowing that it's improving remarkably well. 

Karee is pretty dozy at the moment, and her mouth hurts - they went in and out of that cavity quite a few times today with different equipment, so she's just plain sore.  And her throat too.  Not feeling like a million bucks yet, but incredibly relieved to be able to be cautiously optimistic that this ride is nearing the end.  We kept our arms and hands inside the car at all time, and we're hoping to depart safely at the station!

Thanks so much everyone - for all the kindness, prayer, good mojo, and all the different types of support you've given so freely.  You can never know how much it has meant to us!

Peace, love, and all the good stuff.  Look for another (hopefully boring) update in December when they take another look!

Steve and everyone else around here!

Ding Ding Ding - Round 3

Hi all,

Folks have been asking about my dear wife lately, and while there hasn't been a whole lot to discuss, that's starting to change...

First of all, know that Karee is really doing pretty darned great.  We've been exercising almost every morning for 45 minutes to an hour, either riding bikes or walking.  It's been great - plain and simple.  This is totally new for us, we've never been able to do this, but now we leave the kiddos at home still asleep and we can get out and go.  It's great!

Now, to the current medical situation...  8 days after the trachea shaving, the old E.N.T. said it was still clean and clear.  2 weeks after that however, our new E.N.T. saw plenty of scarring return.  I believe he said her trachea was 40% blocked.  That was not good news.  Karee doesn't feel it much/most of the time.  However, a couple of times a week she'll be coughing something up and it will get stuck at the stenotic (scarred) area, and she can't talk for 5 minutes, sometimes longer.  That's a bit of a drag to put it mildly...

This Tuesday (2 days from now) Karee will go in for an exploratory procedure.  They'll put her all the way under and they're going to take a look at everything there is to see.  Our new E.N.T. will be the head doctor in the room, but our pulmonologist will also be there, as will our good friend and E.N.T. Tyler.  Things they're looking for:  how 'bad' is the scarring in the trachea?  Could it be that it has stopped at 40% blockage or even receded from there, and perhaps (maybe??) we can just leave it alone and she'll be fine?  Or, is she a candidate for a cricoid-tracheal resection?  This is a possible end point that all 3 of our docs have mentioned, but it's not very exciting from our perspective.  In that procedure they will go through the front of her neck, cut away the scarred area, and then reattach the trachea.  I keep envisioning my sloppy cutting through of plastic kitchen piping and then reattaching with the 'O' rings ala Home Depot.  Perhaps not a great analogy to foster?!  Anyway, they will be deciding if this is a good route to take with/for Karee.

Oh, to back up a step, the new E.N.T. after initial observation of Karee's stenosis, was convinced it was some sort of auto-immune disorder, and ordered a huge blood draw.  8 or 10 vials of blood later, we know that she is really very healthy, no positive indications for auto-immune ANYthing and bla bla bla.  They are collectively scratching their heads on this one.  Apparently her case has been presented at a few conferences, and the smartest guys in the room are left scratching their heads.  Ooooh, I just love a woman who's an enigma, don't you?  Well, maybe not in this case!

Anyway, we also are looking forward to hearing what's going on with Karee's lungs, hoping to hear that they look healed and healthy, with no new scar tissue forming.  Hey, a guy can hope, can't he?

Current bottom lines:  Somehow, surely, the stenosis and the scarring over the entrance to the lungs is connected - it seems too random for them to be not related, BUT, they don't know of any pathology that would act like this... 
We've had 3 smart doctors say that the cricoid-tracheal resection would really 'fix' the trachea situation, and I guess that bodes well, but from the cheap seats I don't understand exactly how it could 'fix' something where they don't understand the actual cause.  What if they do the surgery and it still comes back?

We'll cross these bridges as they come.

While the situation is reasonably complex, and at least mildly frustrating, please don't think that we're spending our moments wringing our hands and worried about it.  Not the case!  We're enjoying summer with its change of pace, some exercise, camps for the kiddos, a Canada vacation on the horizon...  Life is good!  We're blessed with wonderfully caring family and friends, colleagues and students.  We're in a good place, we're just looking forward to getting past this one teensy thing!

All for now, keep us in your thoughts and prayers Tuesday, 1:00pm Mountain Time!

Steve (and Karee and the kiddos too)