Saturday, April 28, 2012
Okay, that's just plain cool.
"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
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
Friday, April 27, 2012
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!)
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!
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!
Thursday, April 26, 2012
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!
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
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!
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
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
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