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)

Well, that was nice while it lasted...

Hi all,

Well, it was nice being a boring patient for a week.  We met with the E.N.T. today, and he took us out of the boring patient category, and back into the "we're not quite sure why this is happening" category. 

He sent the excised tissue off to pathology and he had expected to see straight up scar tissue and inflammation.  Those were present in the pathology report, but there were also granulomas present.  If his original diagnosis was correct and complete, there would be no granulomas.  So, he thinks it is 'sarcoidosis' which is an auto-immune disorder.  The pulmonologist, who we have not seen since the procedure a week ago, apparently does not agree with the diagnosis. 

The E.N.T. (who shall remain nameless in this blog) is sticking to his reflux diagnosis and is telling Karee she absolutely needs to be on that medication, (proton-pump inhibitors, or PPI) likely for the rest of her life.  We would beg to differ.

From our perspective, Karee has had diminishing lung function over the last X years (3 years? 7?) and thanks to their excellent and skilled intervention, she now has two, beautiful, healthy, fully functioning lungs again.  I gotta think that her body deserves some type of adjustment period to work out the kinks, and not be thrown all kinds of meds that will fight symptoms and not causes that aren't even yet fully understood!

So, when Karee told our dear E.N.T. friend that she wouldn't take them for at least 6 months, he went on a bit of a tirade, and said that he wouldn't treat her any more, that if she wouldn't follow his treatment regimen, he wouldn't remain legally and medically responsible for her.  He went on to say a bunch of "if this" and "if that"s, and "if this then there's a 14% chance of C_______"... 

Well, we're kind of glad to see the back side of this particular doc, who had done nothing to increase our appreciation for all things allopathic.  We will be scheduling a follow up appointment with our pulmonologist (who we really do like) as well as an appointment with a new, improved (hopefully) E.N.T. very soon as well. 

Karee is still taking steroids from the procedure last week, to keep her trachea and lungs 'calm' and under control.  Ironically, they are making Karee anything but 'calm'- she's sleeping 3-4 hours a night, and walks around feeling like she's on a nasty caffeine buzz.

Sigh.  Summer is upon us, though the kids still have a few days of school left, and we're hoping to get to unwind some - we do NOT want a summer of doctors and hospitals!

All for now.  Happy June everyone!

Steve (and Karee)

That's that.

Well hello again.

We're home safe and sound, going over medication instructions and warming up some soup for Karee's pretty-gosh-darned-sore-throat.

The procedure went really quite well - the doctors went in there and did their thing successfully, and it seemed almost anti-climactic! Some of our medical friends have been saying that "you don't want to be an interesting patient" and while I think Karee used to be an interesting patient, she's becoming less interesting now, and we're totally fine with it!

The ENT showed me pictures that showed before and after and it was pretty darned stunning.  Before showed goopy, lumpy tissue that was difficult to identify, and the after showed a lovely long, open trachea.  No complications, nuthin'! We'll check in with him in 7-10 days and go from there.  He felt very good about the procedure.

The pulmonologist did the bronchoscopy as before- there was some additional scar tissue to be removed, and he rinsed out the lung again, took some biopsies, but didn't think anything looked out of the ordinary.  Perhaps surprisingly, it was the airway to the right lung that looked more inflamed than the left, while it was the left one that was completely covered by scar tissue a month ago.  Somehow the leading edge of the scar tissue remained more active, while the scar tissue that had been there longer was a bit more passive?  So yes, he removed some tissue from the right airway and it's clean now, but the pictures show much of the tissue to be rather inflamed, or in his words, "angry".  Looking at the pictures, 'angry' feels about right!

Karee was in very good spirits all morning - lots of our usual banter and silliness.  That started to wane when the procedure was put off (the previous operation in the O.R. was running long) and she was finally wheeled into the O.R. an hour and fifteen minutes late.  I didn't get to see her until 5:45 or so - she had woken up pretty drowsy still and feeling nauseous so they gave her some nausea medicine and that knocked her out for a good hour plus.

At this point she's up and about moving slowly and gingerly, but she's home!

Thanks to everyone for constant support and good wishes, those near and far.  Special thanks to my 'visitors' and hand-holders today - Dick Evans, Kristi Sandusky, and Jerry "Poppy" Justice!  Good conversations all around!

Peace - I'm tired and will be going to bed shortly!

Steve

Ding Ding Ding! Round 2 (or 3, depending on how you're counting)!

Good morning all,

So Karee will be going in today to have her 'trachea shaved'.  Woohoo!  This is the proverbial 'other shoe' we've been waiting to drop.  It was scheduled just a week or so ago, and all thoughts in the past week have led up to, but not very far beyond, this point.

To recap, after opening up her collapsed lung by removing gobs of scar tissue from the entrance to the lung's left main airway, the big plumbing that remained was to take care of the serious narrowing at the top of the trachea/sub-glottal region. Today the E.N.T. surgeon will go in and cut and suck away the scar tissue and dab it with some mighty powerful medicine to hopefully keep it healthy.  A friend of ours who is also an E.N.T. (hi Tyler! and thanks for sharing your expertise!) told us that this magic medicine is what makes this procedure so safe and so successful.  "Mitomycin c" is a chemo-therapy agent apparently, and has been very helpful in the recovery process.  I don't even understand it so much, but he made it seem like a big deal, so I'll jump on that bandwagon. Yay mitomycin c!

So after they do that bit of crucial plumbing, Karee's pulmonologist will take over and go back down into her lungs to check to see how the original surgery is healing.  In our follow up meeting to the original surgeries with the pulmonologist a few weeks ago, he said he might remove some more scar tissue if the situation demands it, but he also might just take a look-see and get out. 

Karee's procedure is at 11:30.  We have to show up at 9:30 and I'm sure she'll get to enjoy being picked and prodded for a while before we settle down and sit in pre-op for a good long while.  I will be passing at least some of the time during the procedure at a new favorite restaurant directly across the road from Swedish (the hospital) with one of our very good friends Kristi.  The plan is that Karee will come home tonight, and then first thing in the morning I get to go to the airport to pick up my sister Beth who is coming for the weekend to hang out with Ella and take care of Karee while I head off to the Suzuki conference in Minneapolis for the weekend.  Just a run of the mill weekend around here, ya know?

I don't expect I'll be updating the blog until we get home, so look for a recap of the days' excitement 6:00 or 7:00pm?

Thanks for all your good wishes!  While we're a little nervous about the procedure (this tissue they're removing is uncomfortably close to my singer wife's vocal cords after all) we're in the hands of the best of the best, and this really should be the beginning of the end.  Hopefully an end to chronic coughing and wheezy breath, and the dawn of a new day!

All for now,

Steve

Woohoo! Another procedure!

Hello everyone, time for an update!

We found out yesterday that Karee will go in for another procedure next Thursday, May 24.  During this procedure, the E.N.T. will shave away the scar tissue from her trachea that was creating the stenosis/narrowing.  Also on the docket will be a check in with her lungs, to see how it's healing from the original bronchoscope.  The pulmonologist says he may do some more scar tissue removal down there, it depends on what he sees.

We're mostly hopeful at this juncture, although the E.N.T. seems to be pretty heavy handed in the medication department, telling Karee she'd be on steroids for months and months, and a proton pump inhibitor likely forever.  (His diagnosis was that she has 'silent reflux', reflux of the esophogus.)  This bit of the diagnosis was very upsetting.  Karee is having to rework her ideas about western medicine throughout this process, and until now she's received such a high level of respect and caring from her doctors, that this particular doctor came off looking not so good.  We've had conversations with other medical folks in the know who disagree considerably with the length of prescriptions involved, so the final chapter there has not been written.

As always, thanks so much for everyone's continued concern and support for Karee and all of us as we work through this, ahem, 'excitement'.  May is usually pretty crazy, but this May has been way over the top!

Thanks again,

Steve (and Karee and Miles and Ella)

An update from Karee

Hi there,
I thought I would send out an update on what is going on with me...right now, I'm just in recovery mode.  I'm not doing much of anything and it feels a little weird!

My energy is pretty lackluster, but I am managing to get out and go for a short walk.  After that I need a nap!  Two procedures requiring anesthesia make bouncing back a little rough.  I'm coughing like nobody's business and it has begun to take a toll on my voice...I'm pretty hoarse today, but it's important for this stuff to move out of my lungs!

I have an appt with the pulmonologist on Monday afternoon and an appt with a neurolaryngologist on Wednesday afternoon.  No idea what will happen at either of these appts!

Alyson, if you could plan on teaching Thursday and Jilly, if you could plan on teaching Saturday, that would be great.  I'm not sure that it's time to get back just yet.  Hope that works out still...

Your continued healing thoughts and prayers are still requested and appreciated.  Thank you all so much for helping us out!

xoxo,
Karee

Okay, that's just plain cool.

So one of Karee's therapies involves this little plastic contraption.  Her job is to inhale through the tube and see how high she can get the blue thingamabob to gloat.  Yesterday she could maybe get to 1000, and just now she just popped that bad boy all the way up to 2000!  It's almost like she somehow doubled her lung capacity in the space of a day!

"Why?" do you ask?

Good morning!

This post is coming to you live from my living room after 10 delicious hours of almost entirely uninterrupted sleep!  Karee is going into hour 11 of sleep, along with Ella.  Almost makes me want to weep with relief!

I realize that I haven't spoken about the 'why' behind this whole episode.  As in, how do the doctors explain this?  Well, they have a working theory, but it still feels like a long-shot to me.

7 or 8 years ago, Karee was complaining of, well, the symptoms from which she's continued to suffer - (intermittent) difficulty breathing /poor lung function, and some wheezing.  So, at that time, she was doing some voice work - occupational therapy for voice, basically, with some big wigs at the Denver Center for the Performing Arts (DCPA), and they recommended she go to National Jewish for some expert medical opinions.  For those not in the Denver area, National Jewish Hospital is the #1 hospital in the country (the galaxy!) for lung related health issues. 

Karee basically spent the summer in and out of National Jewish doing all the possible tests/scans they could find.  They thought that the wheezing came from air crossing a hardened mass at the back of her tongue, but not from anything in her lungs as her lungs looked and sounded fine.  They concluded that she had acid reflux.  Since it's been a while since that particular 'excitement', I don't remember all of the details.  My memory of the event was that after all the tests that measure stomach acid (the 24 hours with a tube down your nose is a really fun way to spend a day...) she did have some acid reflux, but that it wasn't extreme by any measure.  But, they talked us in to her having surgery for it.  So Karee had a 'half-lap-Nissen-Fundoplication' on December twenty-something 2005ish.  I remember it being a rough go- she couldn't eat for a week.  So anyway, this surgery definitely put an end to any acid reflux that she had.

"Gee Steve, that's a weird story to tell, what does that have to do with what's going on now?"  Hey, great question, so glad you asked...

The working theory is that when she was having acid reflux, that it hit her left airway pretty hard, and her body reacted as if it was being attacked, and started to create scar tissue to protect itself.  Then, even though she had surgery to shut down the offending reflux, the body had basically an over enthusiastic response, and didn't realize it could stop creating the scar tissue, and just kept right on doing it.  And doing it some more.  And it kept on doing it until present day when she lost the use of her left lung and it collapsed.

And while I think there are plenty of holes in this theory (I was never convinced of massive acid reflux in the first place) it's the best they have to explain the situation.  I am not sure if I've conveyed this part of the experience - that the doctors have been flummoxed and bamboozled by this since the beginning.  None of this made sense to them.  Not the symptoms, not the x-ray or scans - someone her age and otherwise healthy shouldn't have lung issues like this.  Before cancer was ruled out (yay!) they were saying that they do NOT see lung cancer or lymphoma in middle aged women.  The granuloma argument equally made no sense (as Keith pointed out, it was unlikely she was kidnapped in the middle of the night and forced to go spelunking in Costa Rica!) as Denver is so dry...  While being debriefed after the Thursday procedure, the pulmonologist who scraped away all the scar tissue looked so excited and happy (can a surgeon look 'giddy'?) that it was all 'just' scar tissue, and nothing scarier than that.

We don't know why it happened. If they're working theory is correct, we don't know if the scarring could start up again.  We will be seeing her doctors again this coming week to debrief fully and find out what the next steps are.  She is going to be seeing an E.N.T who apparently specializes in the area of the trachea immediately below the vocal chords, which is right where the stenosis (narrowing) is.  That's the doctor's current concern, is how to remove the stenosis.  During the procedure Thursday they 'stretched it out' and acknowledged that it would be temporary, so it's very possible she'll have to have some more surgery to carve some of that away.  This does not excite us, and we'll hope to be presented with some options. 

Okay, I'm signing off.  It took me half an hour to write that out, and I would like to take advantage of just a few moments of 'alone time' that I've had recently!

Continued thanks for your continuing support!

Steve

Homeward Bound

And in the grand scheme of things, one is told to prepare for the worst and hope for the best.  Early on I was pretty terrified of what 'the worst' might mean, and it's so clear now that we're very very close to the absolute 'best' of possible outcomes.  The doctors were slightly at odds through the day on if we would get to go home today, but we just got the official word, we'll be home for dinner!

Lung is still expanded, Karee is coughing a new kind of productive cough, (not to be too gross, but she is almost literally 'coughing up a lung'!) and all her vital signs are where they need to be.  Miles took her for a walk around up and down the floor a while ago, and Karee is feeling good.

Ella is packing up the room for us - we've only been here 4 days but there's already a bunch of stuff to pack in!

The story is by no means over, but we're pretty sure we're through with the high-drama parts of it.  We still have to deal with the tracheal stenosis (narrowing of the trachea) and keep a close eye on the lungs themselves, helping them to heal from the trauma of the procedure, keep infection at bay  and keep inflammation down.  I'm not afraid of that part.  I'm particularly looking forward to hanging out with my wife who I expect will soon be enjoying greatly increased lung capacity and function!  Woohoo!

We're sooo grateful to everyone for their caring and generosity.  That could be the understatement of the week!  To feel lifted up by one's community is a rare thing - a rare gift even, and it's one we've been given in abundance.  Thank you to all, near and not so near, for your concern, prayers, love and support.

 And now to get out of here, and get home and take a nice long nap in OUR OWN BED!

With grateful thanks!

Steve (and Karee too!)

Some waiting and waking and walking...

Hello all,

So I stayed at the hospital last night to be with Karee, and the kids went to their Nana and Poppy's house for the night.  Honestly, this hasn't been easy on the kids, and it became apparent last night - Ella readily showing that she's been pushed a bit to far.  I made a deal with her - if she went to Nana and Poppy's house last night, she could have the whole day with me today.  Gonna let her play hookie from school, and maybe we'll catch the Chimpanzee movie?  Miles is ready for this to be done for sure, but he is holding up like a trooper - really he's been fantastic...

Anyway, Karee took a long time to come out from the anesthesia last night.  It really feels like she only had maybe a half hour of real lucidity before they gave her some anti-nausea medicine to combat the effects of some anti-biotics, and the anti-nausea medicine made her very very sleepy.  In that half hour though, I did get to explain to her what happened during the procedure, and she said that she could already feel a "huge difference" in her breathing.  Her eyes moistened up and it was a beautiful thing.  Honestly, I think it's in the category of things-I'll-remember-for-the-rest-of-my-life.  This may not be the end of her breathing issues, but it certainly is a major turning point at the least!

Today we'll look forward to talking to the doctors to see what they're thinking.  We're hoping to go home soon, (today?! please?!) but will do everything they think is safe.  Karee has gotten up to go to the bathroom a few times under her own auspices, so that's good.  Hopefully we'll graduate to a walk up and down the hall later this morning - that'll show those doctors she's ready to go!  (_Insert plug for the power of positive thinking here_.)

Karee has her eyes closed again right now trying to eke a few more minutes of sleep out of the 'night'.  She had a very sore throat last night which was expected, so hopefully as she wakes today the sore throat will ease off and she'll really come around to being her own best self as usual.

Some of Karee's best lady friends are due to meet here in our room for tea around 9:00, and it will be great for Karee to see her pals.

I'll post more later when we get some more input from the team of doctors.  Oh, and I have to mention how *wonderful* the nursing staff has been here.  Gracious, kind, professional, caring.  Wow, very impressive.

Hmmm, this was to be a 'small, quick' update.  I'm not sure I know how to do one of those!

Peace everyone!

It's early yet, but it looks like some seriously GOOD NEWS

I'm back in the room with my handy dandy medical translator Don (really, everyone should get a Don!) after the debriefing with the pulmonologist.  Karee is in post-op waking up.  She will come back to the room in half an hour or so.  The news is really the best we could have hoped for.

The situation in her lungs was actually worse than they thought after the brief scoping yesterday.  In the pictures, it looked like a beautiful open right airway and a completely clogged left airway, and a couple of pinholes that somehow were snaking into the left lung.  That was NOT what they were looking at - they were seeing her right airway which was 1/2 way obstructed.  The pinholes were openings to the left lung. 

So she hasn't been breathing through a straw to one good lung instead of two, she was breathing through a straw to half a good lung.  Yikes!!

They went in and scraped away a bunch of scar tissue clogging the right airway, and then proceeded to clear the left airway.  No tumors, just basically scar tissue. A couple of inches of it, and they had opened up the left lung and it looked beautiful down in there!

We're not entirely out of the woods of course, and we don't know exactly what the next steps are, but we're certainly very far from worst-case-scenario land.  Insert another MASSIVE sigh of relief!

Please feel free to leave comments on the posts - Karee has been helped substantially by all the gestures of good will and sincere words of kindness.  Thanks everyone...  If there's more stuff to post, I'll get back to you.  If you're lucky, you'll get to hear the funny and mildly inappropriate jokes I got to tell Karee and the nursing staff in the pre-op!

Pretty Flowers and Serial Visitors

Hi Everyone,

Thanks to my folks, Karee's folks, Yongmei, Tammy and Kimberly for our beautiful flowers!

Karee is in the O.R. as I type this - I received a phone call from the nurse at 4:20 saying that she was just getting started and it was going well (the procedure was set to begin at 3:30, but I was told it would take quite a while to get her sedated enough to begin).

I have been just unbelievably fortunate to have fantastic serial visitors - Dick Evans (pastor at Wash Park Methodist) sat and chatted with me while I ate a chicken pot pie. As he had to leave, Zach and Megan Anderson (guitar family extrordinaire) showed up to sit with me for a while.  And exactly as they had to leave the building, Don Weinshenker showed up for the home stretch to assist me as pair of ears #2 for the post-procedure debrief with the physician(s?).

So, lucky lucky me, I hope to hear lucky lucky things about my wife very soon. 

Will keep y'all posted!
Steve

This is a test...

Seriously, this is just a test.  I'm just checking to see if I'm smart enough to use Karee's "smartphone" to make blog posts on the fly.

Getting started

Hi Everyone,

I'm going to try and cut down on the # of emails/texts/phone calls and keep all the updates about Karee's progress in one handy dandy spot, and here it is!  Tell anyone who might be interested in keeping up to check out this blog. 

If you didn't get the update I sent out yesterday, here it is.  After this, it is likely that the next update will be dinner time or after today/tonight.  Thanks for all your support everyone!

So, here's the update from the day (Wed, 4/26)...

The procedure was not what we had hoped it would be.  They were going to go in to her left airway and see what the blockage was - if it was mucous, they were going to break it up and suck it out.  If the air tube was being constricted from the outside, they were going to both poke a needle through the airway and biopsy the tissue on the other side.  They were also going to do an ultrasound to get lots and lots of data about what's around the airway.

BUT...

She has a 'tracheal stenosis' which is a narrowing of the trachea, about 3cm below her vocal folds.  The trachea should be ~25mm across, but this narrow passage is down to 8 or 9 mm across.  So, the scope itself being 6mm basically cut off her air supply.  So they couldn't spend significant time down there doing work.  They would go down for a few seconds, take some pictures and then come back up so she could breathe.  It was disappointing, but it's still good information that they need.

So,  while the doctors were deciding what to do next, her attending physician ordered a PET scan, which is basically a cancer scan.  Finally for some good news, the PET scan was negative.  (insert large sigh of relief).  And while not definitive, it's pretty unlikely that it's cancerous.  So, that's VERY good news!

The thoracic surgeon was here just a minute ago, and Karee is going to have another procedure tomorrow at 3:30.  They will put her out on full sedation, put a breathing tube down there, expand the narrowing so they can get all the tools down there that they need.  They'll try and do what they set out to do today - clean it out if it's mucous, and likely take biopsies.

Since it's not cancerous, the doctors say it's likely some type of fungal growth/infection.  They were using the word 'granulomas' so I'm sure I got the spelling wrong.  They keep asking if she's spent time in lots of different exotic places, as these kind of fungi rarely happen in Denver.  (They mentioned one physician friend picked one up when they were caving in Costa Rica...).  I don't know what the treatment protocol is if it's one of these fungi.

They are still not ruling out a simple mucous plug, which they can clean out and let the lung go back to doing it's thing.  Fixing the narrowing of the trachea is another thing - they don't know if it's a causal relationship one way or the other - the seem a little bit bamboozled by the whole thing.

Perhaps the funniest thing about the whole situation - the thoracic surgeon's name is Dr. Guber.  Pronounced "Goober".  Really.

Okay, I'm tired and I think I can stand down now.  It's been a looooong darned day.  thanks to all who have said they'd help out with kids and meals and such. It's very possible we'll be here through the weekend, although only time will tell...  Special thanks to Dick Evans and Don W for coming and hanging out with me while waiting for Karee to be done with her procedure.  Also, thanks to Don for being a 2nd pair of ears, and a highly trained pair of ears at that, while I was being debriefed by the doctor...

All for now,

Steve