Sandra Kim

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

Holding steady

In regard to weaning they've been pretty much holding her steady which I gather is due to her having a fast heart rate at times.  On Wed she was at pressure of 5 all day and did great until the last hour or so when her heart rate went up to 125 or so and so they cut it short.  Because of that they had her at 5 again all day Thursday.  This morning she was at 4.  I didn't talk to the RT and didn't see any notes about it but when I was there her HR was around 120.  So my guess is that again they didn't go further due to a relatively high heart rate.  Seems kind of conservative to me, but I don't know all the details as I haven't talked to an RT or the doctor lately.  I'm just going off of the weaning record and notes in her room and what the nurses tell me.  -Willem

Strategy against UTI, details from meeting with Dr. Clark

After talking with Dr. Clark yesterday as well as Dr. Karen this morning it's apparent that one of the main things that has kept knocking Sandra down has been urinary tract infections.  They have taken some further steps here that make me feel more optimistic.  So she has several very small non-obstructing kidney stones.  These are like foreign bodies which can harbor bacteria or fungus which can be very hard to fully eliminate.  She has been getting an anti-fungal for some time and since then has had no fungal infections.  But about a week ago she did get another bacterial one.  So they are now giving her a very targeted anti-bacterial medication - an antibiotic, basically - that is used specifically for UTI/kidney issues.  She will likely get the anti-fungal and may also continue on the anti-bacterial for as long as she has the stones.  They picked this particular antibiotic because it is really only used for this one thing and therefore if she builds resistance to it she won't lose a major weapon that she could need later, as she would if they gave her something more general that she could need to fight a future pneumonia for example.  They also took her foley (catheter) out and may not put it back in.  That's a somewhat unusual step but they have these extremely absorbent pads that they can check/change often and since she is so light and easy to turn this is a good option for her.  The idea is to eliminate the infection pathway from the outside and up the tube.  They also have special stuff they put on her skin to protect it and they will watch it very closely.

So, with all this I'm hopeful she will quit getting knocked down by infection and can stay strong long enough to finally successfully wean.  They won't even think about removing the stones until she is much, much better - perhaps 6 or more months from now.  But with the above steps hopefully their negative effects will be neutralized. 

It's worth mentioning also that the steroids that she is getting to help her lung function are immunosuppressive.  I think her general condition/health make her susceptible and this adds to it.  I sometimes wondered about the kidney stones - lots of people have them, she's probably had these for a long time and they've never been a problem, so why are they causing all these problems now?  I think this helps explain why.  And also I hope that as her lungs improve she can get off the steroids and her susceptibility will go down.  But it's hard to say when that might be. 

The general message from Dr. Clark is that Sandra has continued to show steady improvement in regard to her lung condition ever since she has been at Regional.  Her compliance is good, peak airway pressures low, volume up.  She's been building strength and making progress in weaning.  But challenges lie ahead.  Whenever her sedation has been reduced her heart rate goes up and she tears up.  She seems to have anxiety or pain or both.  But there is no reason to think she is in pain.  She often requires pain medication (which can reduce both pain and anxiety), then her heart rate goes back down.  The plan is that after she is weaned they will "wake her up" by lowering the medication.  I asked Dr. Clark why there would be any reason to think that at that time she'll react any differently than she does now to reduced sedation?  What if her heart rate goes through the roof and they have to just sedate her again?  He didn't seem to have a good answer for this except that their experience with other patients has been that this isn't an issue.  But every patient is unique and her situation is certainly very unique.  We don't know what she's thinking or feeling when she "wakes up".  She wasn't really like this when she was "awake" at Harborview 4+ months ago.  You could speculate about what she might be thinking or feeling but we don't know.  I guess for now you file it under "good problem to have" as when we have to deal with it will be after she is weaned.  Hopefully it will just work out fine.

After weaning she will still have the trach.  But she will transfer soon away from Regional (as soon as her "acute" issues are resolved, which basically means as soon as she is weaned) to something like a nursing place where the main focus is physical therapy.  But the trach is a foreign body and still allows a direct pathway for infection into her lungs.  So her "safety" from infection won't be increased much if at all by weaning.  She has to be able to swallow to have the trach removed.  Her stoke may inhibit her ability to swallow.  Dr. Clark said that it takes something like 21 separate coordinated muscles or movements to swallow, and if any one fails then you can't swallow.  I guess that would have to be re-learned through some kind of therapy.  Hopefully it won't be an issue, but it could be.  The other blocking factor is the stricture in her throat.  Once she is weaned specialists will take a look at it and decide how to address it. 

Weaning status.  Yesterday they started her at 10 because her heart rate had shot up at first, then went to 6 after a few hours and she finished the day at 6.  This morning she was at 5 and doing great.  She didn't seem like she was working very hard to me (she was cool and looked comfortable) so hopefully they'll kick it down even further.  Dr. Clark talked about her having a good window of opportunity right now as she is free from infection and how he wants to push hard at a time like this.  I hope they can.  As we have seen anything can happen.  But with this great strategy to fight the UTI - I'm hopeful.  -Willem

holding steady

In the past few days there hasn't been much change to report.  On Saturday they started her on pressure support of 2 with a plan to go to 0 mid-day but instead they had to increase to 4.  That has been typical.  She hasn't gotten to 0 yet (except maybe briefly).  She did spike another fever of 102.  I think that was Sat night.  But strangely it just seemed to go away and her white blood cell count was completely normal as of yesterday.  They did culutures which I haven't heard all the results from yet so not sure what that was.  She's still on antibiotics for the UTI.  On Sunday she went half the day or so at 2 then seemed to peter out and get tired in the afternoon, so they took her off of the weaning mode.  Yesterday they decided to have her at 4 to give her a bit of a break. 

We're meeting with the doctor this afternoon just to check in with him and get his take on things.  I keep hearing that he feels she's doing great.  Maybe she's just stumbling a little now because of the underlying UTI infection and antibiotics.  It should be interesting to see what he has to say about it, as well as any predictions for the coming weeks.  -Willem