The Life and Lungs of Kim

Last weekend marked my two-month lungaversary.  It is a little stunning to me that it’s only been two months since we got The Call that Saturday evening about a set of lungs that may work and that I should come into the hospital to start the process. On Monday, October 15, I was granted an exception to my Lung Allocation Score and that put me at or darn near the top of UW’s lung transplant waiting list. Seven weeks later, I received my first call that there was a potential match and that I should come into the hospital…but after 18 hours of waiting, the donor lungs were too damaged to transplant so I was sent home.  The next 10 days after that are a blur: lots of holiday gift buying, decorating, planning; busy kid schedules; a brief respite from the hustle with a restful and luxurious visit to a spa, followed a few days later by an ambulance ride to the ER for some stitches in my chin after passing out.  On Saturday, December 15, we got The Call Part Two – Scot and I...

Definition of Mulligan: a free shot sometimes given a golfer in informal play when the previous shot was poorly played Today was a banner day.  It started off a tad grumpy, with sister-in-law Robin and me hopping in the car at the ungodly hour of 6:15am to make our way to Seattle.  But our drive-thru coffees were delightful, traffic was smooth and we were at the University of Washington Medical Center by 7am to have a quick X-ray and then meet Scot at Dr. Mulligan’s office for my official post-op meeting.   Dr. Mulligan is my surgeon , whom I have only met once before (well, when I was conscious) and the reverence with which he’s treated by colleagues and staff is unparalleled. It was a pretty quick meeting, maybe 15-20 minutes but it was huge.  Among other things:  We FINALLY clarified how he opened me up!  He used a clamshell incision to cut the skin under the breast, from armpit to armpit (this is where he took care to avoid any cosmetic implication...

Home. Relieved. Overwhelmed. Tired. Love. Grateful. Home.

Yea for getting up out of the squishy chair by myself! Yea for the Jennifer Justus Rees sighting today! Yea for Cheryl Long who is been a rock these past many weeks and has to take care of her own self, too! Yea for Downtown Abbey being free on Amazon Prime! Yea for the triple grande mocha that I'm drinking right now! And yea for the HIGH likelihood that this is really, truly and for real my last night in this hospital!!!

Today's visit with the kids, along with an afternoon of sun shining into my hospital room and a wheelchair ride throughout the hospital, did good for my soul. I wake up each morning (well, I really wake up at 10pm for an hour-long nebulizer treatment, midnight for vitals, pills and blood draw, 4am blood draw and weight check, 5am X-ray, 6:30am doctor visit, 7am pills...and this is still a better schedule than when I was in ICU) trying to figure out what I can do. Can I get out of bed myself? No, unless the bed is super high. Can I walk to the sink by myself? Yes. Can I get off the commode? Nope -- and do I need one or two people to help me stand up from it? Can I get back into bed without someone getting my legs up for me? Most of the time. And everyday it's a little different and it's mostly two steps forward, one step back so my overall trajectory is great though I go through times of just wanting my legs to work again, darn it, and be able to feel like I'm ready to p...

Tomorrow will mark 5 weeks since we got the call and checked into the ICU. It’s been a pretty wild ride, but the rumor is we’re looking at a high probability of a discharge on Monday! There are a few things that need to be done before then (nutrition info, drug education at the pharmacy, general home care stuff), but there is confidence that we can all get wrapped up and bring her home. Her trache finally came out (picture below), and it’s been replaced with a gauze dressing while the hole in her throat heals up. The medical issue still holding things up a bit is the tubes in her chest for draining excess fluids away from her lungs. She was down to one of these (from four), but they ended up putting a second back in to speed things up a bit. They’re looking for a very low amount of drained fluid for the day, and while Kim’s close, she’s not QUITE there yet. Still, her progress has been taken into account when considering Monday as the possible go-home day. She’s still pretty weak, but...

Yes, ok, I know, I know. I am SORRY. Please forgive me for skipping a day. Or two.  Or *cough* three. Here’s the thing: Now that Kim is doing so well, there is a lot less to tell you guys! Each day is an incremental gain on the day before, in which Kim walks more, eats more, talks more… everything is more! Which is great and all, but makes it challenging for me to write anything incredibly interesting, e.g., “Kim is doing better. Again.”.  However, after a few days the small news gathers into bigger news, and I’ve got some tidbits for you at last. So forgive me? Here goes.. Kim has been officially transitioned to “floor care” which means she’s no longer technically an ICU patient because she’s doing so great and doesn’t need the constant nurse attention. I say “technically” because they haven’t actually MOVED her to the floor (AKA across the hall to the rooms with better paneling and fewer nurses) because there aren’t any beds available over there. Even still, the in...

...so this is the flip side, eh? Last time I wrote on Facebook was a month ago, as I was readying to be wheeled into the operating room for my double lung chronicle of events from my amazing husband has been invaluable. I've got bits and pieces floating in my head, intense emotions, blurry thoughts, and so many other things. And it's still hard to focus for too long on many things like writing as my attention is necessarily devoted to relearning to walk, breath, eat, talk and other talents I thought I'd mostly mastered a few years ago. But I wanted to let you all know I'm on the mend and am finally more "Kim" than not. Love to you all and so much gratitude for my village, it hurts my heart (but this time in a very good way).

Kim’s physical therapist, the alluring and dynamic Brandon (just for you, Shannon) asked her to walk 170 feet today, so naturally Kim did 470 instead. Her loop around the ICU resembled an Indy 500 victory lap, complete with cheering fans and a winner’s medal (the nurses made her one on gold paper and pinned it to her chest). In short, she rocked it and the fans went wild.  She also passed her barium swallow test with flying colors and celebrated with her first real food in a month: meatloaf, mac ‘n cheese, sherbet and ice tea. Her CT scan showed a bit of fluid buildup around her heart, but not enough to be overly concerned about. They’ll keep an eye on it over the weekend, but the team doesn’t feel like it’s going to impede her progress at all. Personally I think they’re just using it as an excuse to keep Kim around a bit longer since they’ve all fallen hard for her.  More tomorrow!

Status: ROCK STAR. Kim doubled her previous walking record, and afterward said she felt fantastic doing it. Vent? What vent? She is talking up a storm. Remember how I told you her first words to her mom were “Thank you for all you’ve done” ? Well, her first words to me were “I’m pooping.” And yes, she’s going to kill me for telling you that. And no, I have no regrets Her voice is kind of hilarious. She sounds just like Marge Simpson would if Marge was a cranky old New Yorker. When Charlotte heard her on the phone she said “Your voice doesn’t sound like you, but I love you anyways”. So big relief there. She also had a long talk with our favorite physician’s assistance, Becca. Becca has been with Kim since she was discharged from the OR and has been right there for all the tough, and sometimes confusing, times of Kim’s stay in ICU. Kim gave Becca a really great perspective on what it was like being the patient during this whole thing, and Becca expressed just how thrilled she ...

Oops, almost went to bed without filing my report! I briefly flashed on you guys outside my house with pitchforks and torches! Sorry to make you wait for what was a rather uneventful day. Kim walked further, talked more, and was off the vent the whole time. Seems like for good at this point. She also ate some blue vanilla pudding, which is the first official thing she’s eaten in almost four weeks. We’re supposed to watch the trache tube for signs of that blue dye (which would mean it’s going where it shouldn’t) but we saw no sign of it. Her tests results following the plasmapheresis FINALLY came back and told the right story, so they FINALLY removed the really huge and uncomfortable catheter from the side of Kim’s neck. I know it’s an awkward metaphor, but every time Kim gets disconnected from something I think of it like a beautiful hot air balloon, throwing off its lines until it can finally float freely away into the sky. Makes me pretty happy to see :)

SHE SPEAKS! The speech pathologist came to visit today and Kim managed her first words in 3.5 weeks! To accomplish this, the balloon that holds the trache in place down in Kim’s throat was deflated a bit to allow air to pass by, and the it was just a matter of dusting off the old vocal chords. Kim’s first (quite hoarse) words? “Thank you for all you’ve done, Mom”. I mean, how sweet is that? Right?! After a few more words her balloon was re-inflated and it was back to reading lips. She’ll work a bit more on this each day to slowly bring her vocal chords back to full strength, but it’s already a relief to know that they weren’t damaged by the tubes. Also, Kim walked 90 feet today, doubling her previous record! All this without vent support, so it seems super likely they’ll just call it quits on the vent once and for all tomorrow. She’ll still have to wean slowly off the trache, but she can be much more mobile not having to lug that machine around wherever she goes. Slowly but surely...

All is well… not much to tell! Kim was off the ventilator all day today so I like her chances of being off of it permanently starting tomorrow morning. She did more exercises, walked a bit further, and the doctors confirmed no biopsy will be necessary because she’s doing so great. I’m hoping that my reports are going to be shorter and shorter from here on out until the day I tell you all she’s coming home.

Another solid day of progress (and another brief update). Kim was rocking the low vent settings so well that they decided to just take her off of it entirely for the afternoon.  This means that while she still has her trache tube, it was hooked up to just good old oxygen like you’d get with a nose cannula rather than to the gangly vent machine.  So Kim was doing all her own breathing with zero pressure support! She even did some exercises while under her own steam without any issues. They’ll hook her back up to the vent for the evening so that she gets a good night of sleep, but most likely they’ll pull it again tomorrow for gradually longer periods of time as part of the weaning process.  As she continues to get stronger, they’ll replace the tube with increasingly smaller ones until she’s free of the tube entirely. Somewhere along the line in this process (maybe a week) she’ll be able to start talking a bit and perhaps even drinking something more delicious than diluted...

Today's update will be early, short, and awesome. You're welcome! The plan for this weekend is to just step back and let Kim do her thing, and that's exactly what's happening. She was on very, very low vent support pretty much all night and day, and at this point it's so minimal they're saying they may as well pull it Monday if she maintains her strength. But on top of that, even with the low vent support, Kim walked MUCH further today and say in the chair MUCH longer. She's still working herself to exhaustion but she's making enormous progress. No doubt tomorrow will be even better! She has a bit of a tough time focusing on the tiny words in texts and Facebook posts for very long, but she IS reading them and it really gives her a boost to hear from you guys. More tomorrow!

STEPS HAVE BEEN TAKEN PEOPLE! Which is to say Kim did a little walking today on her own power! HUGE MILESTONE! It was really, really hard but she grit her teeth and pushed through it. The physical therapist, Brandon, gave her just the right amount of encouragement, pressure, and praise, and when Kim made it back to her bed there was a lot of cheering from everyone.  Her oxygen levels remained perfect the entire time, and getting her body moving felt great in a “hurts so good” sort of way.  The work wiped her out and she was out for an hour or two of solid napping afterwards. And then, because simply WALKING for the first time in THREE WEEKS wasn’t enough for our Kim, she decided to impress us further by getting out of bed again and sitting in a regular old chair for a good hour.  This is also a first and shows how much stronger her abdominal muscles are becoming and how much control (i.e., balance) she’s gained.  Sitting in the chair was also a perfect opport...

End of day update for Thursday, January 03 Progress, progress, PROGRESS! We started off the day with the good news that based on the results of her CT scan yesterday, no lung biopsy would be necessary. They still wanted to do the cardioversion to correct the flutter, but this turned out to be a fairly straight forward procedure performed right in the room. It was not without excitement however! The cardio people came in with the machine that applies the shock and the nurse got Kim all set up with conductive pads applied to her chest and her back. The idea is the current flows through the pads and resets her heart’s rhythm to what it should be , eliminating the flutter. It works much like the paddles you see on TV but in a more controlled, less panic-y way. Still, it’s a jolt of electricity and they wanted Kim to be completely out for it, so they gave her a bit of fentanyl and started dosing versed. So they gave her the first dose, waited a few minutes, and then called her name. Sh...

Another great day of progress all around! MAJOR HIGHLIGHT: Kim and the kids got to see each other! The kids were pretty overwhelmed at first, but happy tears were quickly followed by excited updates on Christmas presents, friend sleepover stories, and how much they just plain old miss Mommy. The four of us had some time alone to just be together for the first time in 2 1/2 weeks (by far the longest we've ever been apart as a family) and it felt great for us all. They’re excellent lip readers, and they were not stressed, just curious, about all the tubes and machines. It was awesome. On top of that, Kim got a ton of needed mobility exercise, pushing herself beyond what was being asked of her. She stood on her own for the first time, did some in-place marching, sat up a bunch, and all sorts of other physical therapy stuff. Needless to say, this completely tuckered her out and by night time she was ready to crash. Still, she looks great and her spirits are high. In more medica...

Sorry for the late report! I'll keep it short: Kim had a really great day today and looks and feels better than any day thus far. The tests following the plasmapheresis showed they got two out of the three antibodies they were looking for so now they're targeting the third with a specialized drug. Her number look great and she's getting some mobility exercise although we'd like to see a bit more. Trying for bringing the kids tomorrow!

A bit of a tough day, unfortunately. Kim was pretty restless in the morning, feeling very hot (although her temp was ok) and generally cruddy. She had a 30 minute bout of a-fib (this is irregular heartbeat, in her case spiking in the 170s and then dropping) which left her pretty wiped out. This, coupled with a higher white blood cell count has the doctors worried about infection and so she's being doused in wide-spectrum antibiotics while blood labs are being run. We ended up deciding bringing the kids here in the midst of all that wouldn't be the best idea, but we'll see how it goes tomorrow. On the plus side, she's done with plasmapheresis and now we're just waiting for the results to be interpreted. Also, her oxygen levels continue to look very stable, and she managed some more mobility exercises. Still, we really need to get a handle on the mystery of what's causing some of her less-great symptoms. Paging Dr. House? 2013 holds great promise for us, and ...