Sandra Kim

Request for pics and stories of Sandra

If you have pictures of Sandra please email them to ariev@microsoft.com.  These may be used at the reception and I'll be posting all at a new website RememberSandraKim.com .  We could also use a few stories to seed the site, but we'll be allowing folks to post their own stories once it's up and running. 

Thanks,  --Arie

Services at 2 p.m. Saturday - Capitol Hill Presbyterian Church

<11/4 update - viewing hours expanded per Willem's request>

Sandra's friends and family would like to invite you to come to remember Sandra and celebrate her life this Saturday November 7th, 2009 at the Capitol Hill Presbyterian Church.

There will also be a viewing for family, close friends and anyone who feels the need to say their goodbyes to Sandra from 11 a.m. nearby at the Bonnie Watson Funeral Home on Broadway and Howe street.  There is another service there from Noon to 1:15 p.m., so keep that in mind.  Bonnie Watson will allow us to use their parking lot for free, but space may be limited until 1:30 due to the other service.  Nearby pay lots are shown on the map below and there is a back entrance to the lower part of the Bonnie Watson lot from Nagel Pl.  The main church lot at the north entrance is intended only for use by family and those who require accessibility. 

If you wish to speak for more than 2 minutes, please send mail to ariev@microsoft.com and we'll get you on the speakers list.  There will be opportunities for those not on the list to share, but we're asking that you prepare your remarks and limit time to 2 minutes unless prearranged.  This should give everyone a chance to speak with even a large crowd.

There will be a reception to follow at the church hosted by the great folks at Wing Luke Elementary. 

Directions: 

• From I-5 Southbound Take the Stewart exit (# 166), turn left on Denny follow Denny to Harvard and turn right to reach the church -- or -- follow Denny to Broadway or Nagel Pl and turn right to access the Bonnie Watson Parking lot. 
• From I-5 Northbound (Updated:  Olive Street exit is closed) Exit I-5 on James Street. Turn right onto James St. Follow James St. and turn left on Boren Ave. Follow Boren Ave until you reach University St. and turn right.  Continue to Union St. where you can veer left onto Boylston which takes you up to Howell St. where you turn right to get to the church.  -- or -- Continue down Boylston to Denny way and turn right and then right again on Broadway or Nagel to get to Bonnie Watson.  

For printable directions: Download Services for Sandra Kim

 

Very, very bad news

They always said that any person on a ventilator, any one in the ICU is in danger of not surviving.  No matter how good they seem things can go wrong.  I knew that, I accepted that.  The fact that she was doing so well, and seemly so close to getting out of there didn't matter.  Things did go horribly wrong.  And I had to kiss my sweet sweet wife goodbye yesterday.  She passed away at noon, Monday November the 2nd.  9 months to the day after her skin removal surgery.  9 months and 2 days since she was diagnosed.  9 months and 3 days since the first symptoms.  She was literally surrounded by close friends and family when she went.

The technical stuff is a bit academic at this point but I'll at least summarize the main turn of events.  On Saturday she had some bleeding inside her trachea, probably from the tube rubbing against the trachea or something.  It stopped after several hours and since it stopped they didn't seem overly concerned.  What I didn't understand until Sunday night at the hospital when Dr Clark explained it is that apparently when you aspirate blood into your lungs the coating works as a very efficient blocker of the lung membrane's job of getting oxygen into the blood and CO2 out.  And she had very little good lung tissue to begin with. So she started having problems by mid day Sunday.  Low blood pressure, trouble with respiration.  A doctor called me at 10 or so saying he didn't think she was going to make it through the night.  I found out they were having trouble at around 6:30 but didn't realize it was that serious - or didn't accept it - until that later call.  I was shocked and felt somewhat numb.  It didn't seem like it could be real.

The thing that did it in the end was that she couldn't get rid of enough CO2 from her blood.  There were many complications, many downs, a glimpse of hope at 10:00 the next morning.  But the CO2 makes you acidotic and at some point your tissue, your organs,  your brain can't live in an acidic environment. 

They didn't think she'd make it as long as she did.  I guess it's a testament to her strength, and perhaps her well-known way of pretty much completely ignoring any opinion from any authority figure - anyone period, maybe - that doesn't fit within her own plan that she battled through until noon the next day.  I'm so grateful that she made it to that next morning because the night before had been so shocking and so sudden that few people knew about it and came beyond immediate family.  In the morning more friends were reached and were able to come.  I'm sorry for anyone that would have liked to have been there but didn't know. 

After nothing but grim predictions all night long at 10 or so in the morning her numbers actually started to improve.  CO2 numbers had been literally off the charts - clearly unsurvivable - all night but came into range at that point.  For the first time I thought she had some slim shot.  Just before noon she burst a blood vessel in a lung which bled into her chest cavity. She was so tenuous, and that pushed her over the edge.

At midnight her acid levels had been so high (PH of around 6.9) the doctor called them incompatible with life and sent a sample to a second lab for verification because he seemingly couldn't believe it.  Her CO2 levels - off the chart at the hospital - could be measured at the second lab.  Dr. Clark said they were the highest he's seen in 25 years of practice in respiratory medicine (245 or so?).  Yet her heart raced at 150 all night long, her kidneys and liver started to malfunction.  They could delay the inevitable - for a few hours he said at 4 in the morning - by artificially lowering the acidity, but her lungs had to start working for it to be sustainable.  Dr. Clark prepared me for what to expect in the end - heart failure.  Yet it soldiered on undaunted until the vessel burst around 11:30 or 11:45.  I've often suspected her heart to be the location of her secret power crystals, and so it has seemed throughout her illness. 

Yes, she felt like a super hero - during the illness and before.  But no.  She is human.  In the end could only take so much.  We were close, maybe.  But the burst vessel was too much.  And so now she rests.

We are making arrangements this afternoon with the funeral home.  A service will be set up soon and we'll post it here.  If we need anything we have all the support in the world for it and I won't hesitate to ask.  Mike and Linda have offered to take phone calls for anyone wanting to reach us and their numbers are Mike 206-778-5993 and Linda is 206-714-2508.  <Update> You can also reach Linda by email at ladanderson@gmail.com

I'm so sorry.  It should never have ended like this.  But it did.  All I can do now, other than cry a lot, is try to think, as i did for half the night, of how she was.  The way she was.  What made her so unique and so wonderful.  We are all unique people, every one fo us.  But the combination.  Who she was.  Yeah, I'm the grieving husband, but I don't think it's a stretch to say she was just on another level.  I think anyone that knew her would say so.  She had her way, and it was often very different.  And refreshing and bright and beautiful and sometimes a gigantic pain in the ass.  But she stood out so brightly and strong.  She didn't care about norms or expectations and to the extent that she adhered to them when outside her ideas found them a great annoyance.  And she loved so strongly and openly and deeply.  She loved so many and so deeply it hurt.  And you know it because she told you.  And told you exactly why.  Without hesitation.

I can't say it all here.  I would like people to write down your Sandra stories and insights.  It seems like everyone has one.  I think it will be way too much to get through at the service.  Perhaps we'll have a web site for them or something.

This morning Adriana woke and the first words out of her mouth was "mommy is the best teacher".  Last night she pointed at Sandra's pillow and said "uh-ma" and mine and said "ah-pa" (or however you are supposed to spell the Korean words for mom and dad) and said "that is my family".  I haven't told her but it's almost like she knows.  At breakfast she said "I miss mommy.  is mommy still in the hospital?"  Stunned, I luckily was able to change the subject.  I don't lie to her.  I will tell her tonight I think, and yes I have help.  She had just gone to sleep when the Dr. called Sun night and Russel came over and spent the night and next day with her.  I mention this here because I know it is on everyone's minds.  Wish me luck.  I know I have your support.  -Willem

getting back in balance

They have had Sandra resting with full pressure support for the last few days as they try to stabilize her meds.  They had been giving her methadone via her feeding tube which she has to digest it to take effect, obviously.  The rate it is absorbed through digestion (and amount?) can vary so they've switched her to fentanyl via IV drip which is more accurate and easier to titrate.  Unfortunately she seems to have fallen out of her narrow sweet spot as her peak airway pressures are high and her heart rate a little high also (40 and 120).  Her face looks puffy and they report her lungs to be wheezy - puffy face, wheezy lungs and high peak pressures are sort of classic signs that she is too wet/too much fluid.  Although her body weight is 49.6kg, which otherwise would seem good (this perhaps goes to show that body weight alone is not a great indicator).  There are some other meds she's gotten with various side effects they are trying to manage. 

Basically they are trying to get her back into balance and to start a more controlled reduction of her sedation level, to get her back to weaning.  -Willem

too fast

They think they dropped her sedation meds too much too quickly as this morning when they started weaning she was in bad shape with a really high breathing rate and high heart rate (40/min and 150/min).  So they increased the sedation meds again somewhat and put her on full pressure support (no weaning) for today.  She stabilized and is doing fine now.  The nurse said they thought she might have even had some withdrawl symptoms.  So they are going to take a slower approach to dropping the med levels and go from there I guess.  -Willem

at 0, but needing adjustments

Sandra was at pressure support of 0 today, but didn't do terribly well.  The nurse said that her oxygen levels were fine but that she was building up too much CO2.  They needed her to breathe more deeply too blow it out and they think she's too heavily sedated.  So they had to put her back on rest (full pressure support) for some amount of time while they reduced her sedation.  She has been at around 26 for versed and they dropped her to 15 as well as cuttiing in half her 6:00 methadone dose.  I talked to the nurse around 5:30 and she was weaning at pressure support of 0 at that time.  She said it takes some time for the sedation to wear off and it sounds like they were just watching her closely and trying to keep an eye on the CO2 levels.  I don't know the exact details beyond that.

Well - things are happening!  In the past Dr. Clark talked about her becoming too anxious with her heart rate going way up when they reduced her sedation so we'll have to see how this goes.  If it work's its pretty exciting.  Not only would it hopefully mean that she is more likely to continue to make progress but the idea that she might be more awake more often is exciting as well.  Then again it seems that every time things look hopeful there is a setback, so we'll just have to hope for the best.  -Willem

holding steady

Sandra is at a pressure support of 2 today and doing well.  She went to 4 on Saturday, I gather due to an increased heart rate to around 120 when they started the wean, then they went to 3 on Sunday and 2 today.  I've had a slight cold so haven't been visiting but yesterday the nurse said her heart rate was 76 when I called, which is great.  I forgot to ask the HR just now but the nurse said she looks good and continues to do well.  -Willem

down to 2

Sandra is doing amazingly well.  She was at pressure support of 6 yesterday and did great all day so day they skipped forward to 2 this morning.  When I talked to the nurse this afternoon she was still doing awesome with no changes in the other numbers - heart rate still under 80, which I can hardly believe, low peak airway pressures etc.  So she's in some kind of zone or in some sweet spot.  Whatever it is, we can only hope it keeps up.  

I talked to Karen from infectious disease the other day.  She doesn't believe Sandra had a staph infection.  She thinks that was a false positive due to contamination (one blood sample had it and the other did not).  She still doesn't know what it was as nothing new came up and her white blood cell count barely rose.  It was a little over 8 around the time of the fever, I think she said, and then came down again to something like 6.  She said Sandra reacts differently than any other patient in the hospital in certain situations.  She's a bit of a mystery, she said.  But obviously bounces back from these episodes really well, so that's good.  What's not good in my mind is that she got a fever a week ago Monday and then again this past weekend - both pretty much unexplained.  She's doing so well now but if she keeps getting them once a week and they keep setting the weaning schedule back by a week then we'd never get there from here.  All I can do is hope she can go another week or 2 without setback.  At least in her current seemingly awesome condition it feels to me like that's all she needs.  But we're heading into uncharted territory so who knows how she'll do.  Sure looks good right now though.  -Willem

looking good

Sandra is looking much better today.  They had her weaning yesterday starting mid-day and she went 10hrs with no problem at pressure support of 10.  This morning she was weaning at pressure support of 8 and looking great.  Her heart rate was around 80(!)  And her peak airway pressures were also stellar at around 13 or 14.  Her weight was also up a bit at almost 50kg.  As I have said before It seems - and several of her nurses that I've spoken with agree - that she is really sensitive in regard to fluid level.  When her heart rate was so high at the end of last week I didn't see her weight but it was just over 47kg as of Wed, so it's now around 6lbs higher. 

The infectious disease person is supposed to call me with more detail later today but it looks like this recent infection was a staph in her lungs.  But it also looks like it has responded very well to the 2 new antibiotics they have her on, as she looks great now and is weaning well. 

I know it's way oversimplifying things but I can't help but be fixated by the interplay of the 4 numbers - heart rate, peak airway pressure, pressure support and body weight.  I feel like I could put these numbers into a spreadsheet and make a graph that would show strong correlations.  (Or maybe show that it's more complex than I think!)  With luck they'll keep dropping the pressure support by 2/day and on Friday she'll be at 4 again.  With that increased "work load" I'll be really curious to see how much her heart rate goes up if if her weight stays the same.  In any case, if it's say between 100 and 110, which I hope it will be, then I will feel much more hopeful than last week in regard to pushing on down to pressure support of 0 soon.  I may also lobby for some way to communicate to all the staff that she really needs her fluids balanced (if possible) to target a body weight of 50kg.  I feel tempted to put a note on the wall!  The nurses that work with her recently and/or often know this (Dianne and Mel, for sure) but I don't think the RT's know (or fully believe) this nor do many of the nurses.  I'm also not sure how easily they can control her fluid level (implied by body weight) even if they had a target goal like this.  Actually I'm going to call Ferrial, the head nurse about this. 

All that aside - it was great to see Sandra, and the numbers, looking so good today!  -Willem

fever

Saturday for most of the day they had Sandra weaning at pressure support of 4 but were again struggling with high heart rate.  It was in the upper 130's when Eunhae and I visited that morning.  I again pointed out that she gets that problem when she's too dry (more so than most people, I'm told) to make sure everyone working with her at the moment was aware of that.  The RT also said that the bronchial mist that she's getting can cause increased HR as well, which can make it a balancing act between keeping her lungs in good enough shape to wean and also keeping her HR low enough.  In any case that night she got hit with a fever of 102.  At some point that night or the next morning her heart rate was really high, like 150.  They gave her a pretty large amount of fluids (infection can dehydrate you - or she might have been a little dry already, or both) and she slowed down to 120 or so by mid morning.  Sunday night she spiked a fever again of almost 103.  They did all the cultures and put her on 2 additional antibiotics (I'm not sure when).  When I saw her this morning she was cool and looked comfortable and normal with a HR of 107 or so.  So it seems that either the fevers were "drug induced" and went away on their own, which I think was true of the fever she had early last week, or she has an infection and one of the antibiotics knocked it down.  Since it was 2 nights in a row and she was struggling with hight HR (from the onset of infection?) I'm thinking maybe it's an infection.  We should know for sure when the results of the cultures come in, probably sometime tomorrow.  They have also increased her sedation even further to 25 (ml/hr?) of midazolam, where it was 20 before.  I'm not sure why.  Needless to say no weaning yesterday or today.  -Willem