Halloween Update

Hello All—

Happy Halloween, peeps.  We had a pretty good day today.  Kari slept most of the night last night and was pretty confused in the morning, but by about 11am she was clearing up.  We went outside and stayed up in the chair for over 5 hours which is the longest in a long time.  As the evening went on though, she started to slip back into panic and confusion.  She tends to have extreme anxiety either over something that she can’t explain to us or over something that even she can’t identify.  It was encouraging that she slept, but until she sleeps on a consistent basis, it looks like our problems will continue.  At least today we had a sliver of hope.

I also want to give you all an opportunity to participate with our home church, Brookside Free Methodist Church, in a one week-long fast that starts tomorrow (Tues. Nov. 1st)  The purpose of the fast is to submit to God this whole situation—Kari’s health and mental status obviously, but also all the other issues that surround this.  If you want a good starter list of what to pray for, go to the “prayer and blessing” link on the website.  Specifically our pastor has called us to do a “juice fast,” which means that you would only consume juices and water for the duration of the fast.  If you are healthy, you should be physically able to continue all of your normal activities.  Of course, the exact manner in which you fast is a personal decision.  Some people at our church that don’t feel able to do the juice fast have fasted from solid foods, from TV, from the internet, from a particular food item like coffee or soda, or basically anything else that would be a constant reminder of the purpose of the fast.  If you feel led to participate, give it a try.  You should commit to doing it for the duration of the fast, but if you really can’t make it, there is still a great benefit to doing what you can.  To help us understand what God is doing and teaching us during the fast, we often share our experiences and feelings with each other to gain better discernment.  I would encourage you, if you are not a member of Brookside, to let Jenny Switkes (jswitkes@hotmail.com) know that you are participating and also email her some of your feelings/experiences.  That way we can better understand what God is doing amongst the body of believers and is doing or will do with Kari.  If you don’t want to use your name, that’s fine too, and if you don’t want to let anybody know what you are doing, that’s fine as well—it’s all up to you.  BTW—I know that most of you will probably not read this until sometime on Tuesday, the day this all starts, so if you want to participate, just join in whenever you are ready.  If you have any questions, you can also email Jenny at the address above.  God bless you all.

Aaron.

Update 10/28

Hello All—

Well, it has been essentially 1 month since Kari entered her current mental state and at the moment I can’t say that we are any closer to coming out of it.  Right now she is almost exactly the same as the first night.  Shaking her head back and forth, yelling out a mix of syllables and complete nonsense, and trying to bite her hand and lip.  A few times I had to yell at her because she got a hold of one of her fingers and chomped down on it as hard as she could.  Most of the time during the day she is able to answer the standard “What’s my name?” and “Where are you?” questions, during the night she is much less stable.  Tonight she seems worse than normal as she is completely confused—not able to answer questions or even follow simple commands.  The spasms are particularly bad.  Every minute or so, she will throw her arms up and shake her head back and forth violently 15-25 times and then stop.  A few minutes ago she was screaming “no!” over and over again at the top of her lungs, pausing only to throw her head up and down on the pillow.  She has had two different periods of 1 hour of sleep today, but other than maybe an hour or two yesterday, that’s all the sleep she’s had since Monday morning at 3am.  That’s really all the news I have, I wish there was more.  Everybody says that they know that Kari will get better, but the facts are that even the doctors here aren’t sure what is exactly going, nothing has worked so far, and she isn’t any better than she was a month ago.  I am still hopeful, but unsure of if and when she’ll come out of it.  

Aaron.

P.S. I’m coming home Nov. 5-7 to look at apartments, so if anybody has any suggestions of places near Redlands, email them to me.

Update 10/26

Hello All—

The psychiatrist came on Monday to evaluate Kari and basically just asked her a few questions for 10-15 minutes.  He then went and talked to the doctor, whom I talked to at length after their meeting.  The psychological analysis wasn’t really anything that we didn’t already know: that Kari, while alert enough to know where she is and who is around her most of the time, is experiencing a kind of delirium where she often sees or experiences things that are not happening, such as seeing someone in the room who is not there, is not able to choose the right words to convey her meaning, and experiences a high level of anxiety.  He was very clear that this was NOT a form of dementia and that Kari did not show any of dementia’s normal signs in his diagnosis or in the brain MRI that was performed a few weeks ago.  The basic difference between dementia and delirium is that dementia occurs when brain cells are actually damaged or are dysfunctional, such as in Alzheimer’s or stroke patients, where as delirium is a sudden change in mental status resulting in confusion or abnormal behavior.  Also, we are not any closer at this point to figuring out the exact cause of Kari’s mental state.  The only thing that we can point a finger at as a factor would be a severe lack of sleep and extreme pain, which is what we were already thinking.  The psychiatrist did suggest that the doctors take Kari her valium and her three sleeping medications along with the risperdal (her anti-psychotic) not because he believed that these medicines had anything to do with the cause of her delirium, but because it can be very hard to evaluate a drug’s effectiveness when it is being given with a combination of other drugs.  Also suggesting that this was not induced by drugs was that none of Kari’s meds were changed prior to her slipping in to her current mental condition.

That evening, they made the changes to here drug sheet and started her on Ziprasidone, another antipsychotic that has sedating properties.  The feeling was that they could get both effects from one drug and then would be able to evaluate its effectiveness.  So far, nothing much has changed.  Kari did not sleep at all Monday or Tuesday night, and from last night into today, she seems to be having increased anxiety, mostly about things that are not actually happening.  She always seems to be more relaxed during the day, so yesterday we tried to keep her from sleeping so that she would sleep at night.  Because that didn’t work, today we are letting her sleep when she wants—there is no guarantee that she’ll sleep at night no matter what we do.  The doctors expected that there would be an adjusting period to the new medication and going off the valium and sleeping medications, but also admit that she is one of the most puzzling cases they’ve dealt with.  I think at this point that it is fair to say that it is impossible to make any clear judgments or conclusions about what is actually happening.  There is no consistency with anything.  It’s fairly obvious to me that most of her thoughts and the things she panics over are simply random places her mind is going—sometimes they have a link to reality, sometimes they don’t.  Is there significance to what she says?  Maybe, but to try to figure out any type of meaning from it will inevitably be inaccurate and ultimately be only a frustrating exercise.  Simply because something works once doesn’t mean anything for next time.  At night when Kari is having bad anxiety or spasms, I’ve tried just being ultra calm and soothing, I’ve tried “tough love”, the logical approach, distraction, any combination of the above and also just plain ignoring her.  Every now and then one will work, most of the time they don’t.  So the general plan here is to keep trying to get her to relax and sleep.  We don’t have a time frame for when we think she’ll come out of this, and the nature of delirium makes it hard to figure out its exact causes.  The bottom line is that we need to get her to rest both mentally and physically.  Sleep is pretty much the only thing that should work for her—we just haven’t figured out how to get her to do it.

Update 10/22

Hello All—

We had our third all-team meeting on Thursday.  It was good to get a chance to sit down and talk with everybody about the plan of attack from here on out.  First of all, the doctors asked me and Kari how we thought things were going.  Kari was pretty out of it, but I was able to explain my frustration with things.  It was a month ago that I was at wits end before our last team meeting because Kari had been in constant pain for weeks.  Of course on the day of the September meeting, Kari’s pain disappeared for a few hours, and thinking that the problem was solved, we didn’t get a chance to really explain our frustrations.  I felt that the doctors listened to me this time, and we all basically agreed that in the 11 weeks since we’ve been here, Kari hasn’t really participated in any rehabilitation.  Also, the doctors feel (and I agree) that they are past their ability to deal with Kari’s mental state.  We’ve seen some improvement, but not what they were hoping for, so Kari will be evaluated by a psychiatrist on Monday.  Many people have asked me if this is a normal kind of thing to go through as part of the injury—it’s definitely not normal, and although it is rare, it’s not necessarily unusual.  They doctors are pretty sure about what caused it, but not too sure about what to do from here.  I’ll try to update on Monday when we find out more.  At the end of the meeting, we set a new expected release date of December 20th, assuming that things from here on out go as planned.  Of course they haven’t thus far, so if you’re up for a New Year’s Eve in exciting Englewood, give me a call.  Actually, being here for the holidays doesn’t bother me so much as does the time away from home—my kids at Gage, friends at church, and just hanging out in our apartment together with our cats.  We left for Omaha on July 13th and it’ll be close to 6th months before we get settled into our new place.  (I’m coming home from Nov. 5th-7th to look at apartments.)

As for how the last few days have gone, needless to say they’ve been frustrating.  Kari has been aware of who people have been for basically the past too weeks, but she is becoming more and more delusional, especially at night.  She is taking valium, and three different sleeping medications along with the risperdal which is supposed to slow her mind down, and yet she can’t sleep.  She is so certain that she sees things going on in the room and she started to panic then the spasms start.  I have told here literally hundreds of time who’s here and who isn’t, but all last night and again this morning when I asked her who was here, she named off about 20 people.  Mostly, though, she is just sure that something bad is happening—people are breaking in, out to get us or someone at home is in trouble.  Often she will only whisper or refuse to speak because she is too afraid that someone will hear her.  Even though I know its not here fault, it angers me so much that she won’t listen to common sense, believe me when I say things are okay, or stop talking so she can sleep.  I think the worst part of it is that I feel like I’m taking care of a screaming baby—someone incapable of reasoning who is in a state of panic.  I’m really starting to miss the Kari that I’ve known for over eight years.  The last two weeks she has had one good night sleep and two or three nights with 6 hours or more spread out over about 10 hours.  Other than that, she’s usually only getting a few spurts of an hour or so.  After spending a few days and nights at the hospital when there were no visitors, I began to understand how this must be taking its toll on Kari.  I only slept a few hours over about two days—she’s been doing this for 3 months.  What to pray for?  I’m not sure if I really know what to ask anymore, but patience for me and no fear for Kari sounds good.  

Aaron.

P.S.  My dad did a post a few minutes before this, so make sure you catch that too.

Slow Going

     As we heard of Hurricane Wilma moving so slowly, almost stalling, over the Yucatan Peninsula, I thought of our situation in Denver with Kari and how things there seem to be dangerous and stalled in their own way.  Talking with Aaron, and with Linda who is there again, it seems that things have remained pretty much the same as when Aaron updated last Tuesday.  Last night was, again, a night of relatively little sleep.  Though Kari's basic physical condition holds steady, the accumulating effects of the medicines, unstable sleeping patterns, pain, worries and anxieties, and building frustrations are taking their toll.  As I replied to one question a few days ago, though this type of "stalling" is not unheard of in these cases, it's hard to say it's "normal."  

     Worries and fears and anxieties seem to multiply and multiply and hound Kari every minute.  This morning when Aaron took down some pictures, she began to worry about the blue stick-tack dots that had held them up and were still on the ceiling.  So it's not just worries about being paralyzed, but about everything--miniscule or mammoth, and all of it in between.  A huge mountain is being created, and while I believe they'll get over it some day, the climb seems to get longer by the hour.  As I asked some days ago, please pray for peace for Kari so her mind can rest.  When I think of the basic themes in the Bible, I think about how much there is about materialism and the plight of the poor, but these days what seems most highlighted are all the verses about worries and fears and being anxious.  "Fear not, I am with you," "Even though I walk through the valley of the shadow of death, I will fear no evil...."  Let's pray together that these thoughts too will echo in Kari's mind.  It's so hard for most of us not to fear, and I write this at one of the greatest levels of fear we have ever had.

     Last night and early this morning was my time to coordinate the food program at a homeless shelter in Joliet, and one of the helpers was our good friend Ron Cothrine.  He also broke his neck very high up and at 23 was paralyzed and spent eleven months in a body cast.  "There'll be worst times even than this," he said.  He also was not surprised at anything Kari is going though right now.  "It's the meds and everything big and small--and just think of lying in the hospital 24/7 with nothing to do but worry. They should start some heavy psychiatric care soon."  Then just minutes after I got home last night I heard from Aaron that they are indeed bringing a psychiatrist on to the case, and there is to be a psychiatric evaluation Monday.  We'll keep you posted.  Thank you for remembering us.

 

--Richard R. Guzman       

      

Update 10/18

Hello All—

Kari has had two bad, sleepless nights in a row, and tonight is shaping up to be no different.  At this point, things are almost as bad as they were on 10/6, which was the worst night we’ve ever had.  Her spasms are incredibly strong again and have been going on since 4:00 pm (its now almost midnight), save the one hour she was asleep.  They didn’t start off that bad, but now her whole body shakes and trembles.  She also started to shake her head back and forth so violently that I put her collar back on to protect her neck.  When she’s having the spasms, not much she says makes any sense, and most of it is just a mix of syllables again, not real words.  She’s not totally out of it though, as I’m pretty sure she knows who I am because I’ve learned a lot more about how she is when she’s like this.  Still though, it’s very hard to get her to breathe or try to calm down before she just gives up for a minute or so.  Hopefully this episode won’t be all night.  I feel sorry for her when she’s like this—it’s not who she is.  The doctors came in today to see her and said they might go back up on her risperdal because while she’s more aware and alert now, she’s still having a lot of delusional thoughts.  We have our third full-team meeting on Thursday, so we’ll see what the plan of attack is then.  I know we’ve had our release date pushed back into December, but it definitely could go back farther depending on how long this goes on.  Hey, maybe we Southlanders will get a white Christmas after all—well, hope not.

Aaron.

Update 10/16

Hello All—

The doctors have decreased a lot of Kari’s medications, so she has definitely become more alert over the past few days.  She always knows who people are, but still has a lot of confusion about what is real and what is not.  She will often look at a picture on the wall or just think about somebody and think that they are here, so we took all of her pictures down off the walls and ceiling.  It has helped a little bit, but Kari’s mind still races, especially at night.  I think what is happening is that she imagines things happening, things that are usually bad, and then believes that they are real.  Often she will be very panicked about something because she believes that someone is in danger.  Kari also still has a lot of trouble making sense when she talks.  Generally, what ever she is looking at makes its way into the sentence she is saying, and then she gets frustrated that no one can understand her.  This keeps her from sleeping a lot, although she has gotten some in the last few days.  Spasms too get worse at night and will keep her up for a number of hours.   She has had a resurgence of some of the pain, but overall it is still better than it was before.  I’ll be interested to see how this next week goes.  It has been 18 days now since Kari became confused.  She is so fragile mentally that much of her time is spent just managing stimuli and trying to keep her relaxed.  I’m not sure what the plan is this week as far as therapy or medications.  Although she got up in her chair today, she did not get up for therapy except for Monday last week.  

My brother Rick and his wife Desiree were here this weekend, and we got to go to the mountains Friday because Dustin (Kari’s brother) was out here for a day too.  Pictures should be coming soon.  Still feeling like we’re never going to get out of here, but at least we’ll get to see some beautiful winter scenery!  Monday makes it 3 months since the accident.

Aaron.

Quick Responses

Just some quick responses to questions and comments:

 

1)  What do the doctors say about Kari's mental condition?  They are concerned, but they don't seem to be terribly alarmed.  It's hard to say that this is "normal," but it seems they've dealt with similar situations many times before.  Her condition seems caused by many things, including sleep deprivation, continual pain, the effects of medicines, etc.  There is a psychologist on the team treating her.  They all seem to think she'll come out of this sooner or later.

 

2)  Date of release?  This has been put back from Nov. 18th to some time in early December.

 

3)  "Crazy"?  A strong response to the use of this word.  Let me try to make it clear that no one is making this a "diagnosis" in any way whatever--which is why I put the word and phrase in quotation marks.  The words are Kari's, and to her question, "Do you think I'm going crazy?" which she has asked more than once, the doctors have responded "no" pretty emphatically--which is why I put their "NO's" in capital letters--twice.  If she ever did get moved to the psychiatric floor, that might SEEM like an acknowledgement of "going crazy" (in quotes!), and might feel like this to Kari.  That wouldn't be the case either, though you can see how it might seem that way to her--or to anybody--in her situation.  I'm sorry if I wasn't clear about this.  Take Kari's use of the word as an index of how deeply she fears what's happening to her.  Of all the things that are out of her control right now--including moving her hands and legs, scratching her face, feeding herself, sitting up or lying down, and about a thousand other things--feeling out of control of her mind, feeling like she's "going crazy," might be the deepest fear of all, a fear against which any explanation, medical or otherwise, just feels weak 99% of the time.  We all hope that by the time anyone reads this, she might have gotten through this phase of her rehab journey.  That can't come too quickly for anyone concerned.

 

--Richard R. Guzman    

Remembering and forgetting

     My fifth trip to Denver was October 1 to 6, and it was by far the scariest of them.  The enormous shock and heartbreak of the first trips gave way this time to what Aaron has been describing about Kari's mental state.  As extreme as her physical condition was in the first weeks following the accident, I remember Aaron saying that Kari was still Kari, and there was tremendous joy in that.  Now many times she isn't herself, and that mind teetering on the brink of self and not-self has been truly frightening.  Even the advances take on such ambivalence.  For example, one night I was scratching her nose and forehead and said that I believed pretty soon she'd be doing that herself--that is, bringing her arm up and being able to rub her face against her wrist.  Sure enough, that very afternoon in therapy she brought her left arm close to her mouth twice, and her right arm to it over and over.  One of her therapists, Amanda, cried. But during the next several nights that ability to bring her hand up to her mouth also meant that in her mental state she could bite herself, and she tried several times to do that and we had to snatch her hand away from her face.  If someone had not been with her every minute, the nurses and techs said, they would have had to transfer her to the psychiatric ward.  That's how close we have come to an institutional acknowledgement that she's "gone crazy."  She's asked the doctors, "Do you think I'm crazy?"  Each time they have said a big NO.  They see her a few minutes a day, however, and while we take some comfort in their emphatic NO's, those of us who have sat for hours and hours have felt great fear.  "ICU psychosis," "Sleep deprivation psychosis," "Medicine induced psychosis"--the concepts help, but sometimes not much.  I still believe strongly that she and Aaron are going to be OK, but that belief went through earthquake-like shaking this last time.  You had to keep saying to yourself, "It's a stage she'll come out" even as you were pulling her arm away from her teeth the n-th time that night.

     One morning, after a very bad night, it was plain she thought she was back in 1999, especially when she referred to her "boyfriend" Aaron.  When I said she'd married him, she denied it again and again until she caught sight of the anniversary poster Aaron had made.  "How long have we been married?" she asked.  "Three years," I said.  And suddenly she settled down.  "I remember," she said.  I left the room to get a drink, thinking she was OK, but she was already slipping back out of reality and didn't recognize Aaron when he came in a few minutes later.  "I don't know who he is," she said to her Mom, "but he's sure good looking!"  You can't help but crack up at some of her sayings.  There are still moments of humor, and one reason she loves Aaron so much is that he makes her laugh so much.  When she moved to her new room, I brought in a huge, white garbage bag to put her stuff in, and later that day Aaron had poked holes in it, thrown it over his head and was going around the floor making ghost sounds.  "You're such a dork, Aaron," Kari said, but it was one of the moments of joy we all had during my six days there.  I should say, though, that having Jan Yessa around is a mini riot in itself.  Our stays overlapped, and I realized how much our family is forever indebted to her for her deep love and care of Kari and Aaron.

     Those moments of laughter, the moments when there's a small physical advance do light up the pervading gloom we have felt pressing around us lately.  We have to grab hold of them, and laugh and cry over them, and rejoice.  But as I talked to Aaron I realized again that sometimes when we make too much out of these things it sometimes feels like we're forgetting how--minute by minute, hour by hour--this whole ordeal is just so hard and awful, and for hours and hours that's all there is.  It is truly a dark night of the soul.  We laugh at her saying, "I don't know who he is, but he's sure good looking," and forget how terrifying it is for a loved one to look at you and not know who you are--this after a whole night, hour after hour, of her being in pain and, scariest of all, out of her mind.  Please stay with these two in this, their darkest hour.  It is so dark that sometimes even telling them they'll be OK doesn't help, but seems to hurt. 

     Even when she's "in" her mind it's been very hard.  "She's been getting a lot off her chest," her Mom said to me one midnight when I came on to take my shift.  All the fears and anxieties caused by the accident have seemed to revive every fear, every anxiety, every hurt she's ever had--something completely understandable.  I noticed that not all her arm spasms seemed totally involuntary.  It seemed that at least half of them came on at the same time another fear came up, another anxiety attacked her.  (The new meds she started on the day before I left were supposed to help her mind "rest" more.)  One night we were talking about the verses she did her masters thesis on in Isaiah 43 when I said, "Kari, do you know the verses at the end of the chapter?"  So many are about forgetting the former things, and about God blotting out our transgressions "for mine own sake," as it says in verse 25.  I told her the story, out of Poland, about the archbishop who called in a man who'd been causing trouble because he'd been speaking to God.  He wanted proof, so he asked the man to ask God the next time they talked what his (the archbishop's) principle sin was.  The next time they met the archbishop said, "Have you been talking to God?"  "Yes," the man replied.  "And did you ask him about my principle sin?"  "Yes, indeed."  "And what did God say?"  The man replied, "God said he'd forgotten."  Of all God's miraculous powers, the power to forget transgressions completely must be among the greatest.  It's a power rarely possessed by any human being.

     On the other hand, there's things we forget but need to remember.  One night her pain was so intense that she was screaming, "It's evil.  This evil is going to kill me.  Go away evil."  We prayed for her.  She gritted her teeth and got so tensed-up fighting off the evil she felt that I thought it was only making everything worse.  "Here's another way to think about it, Kari," I said.  "When evil comes around, don't fight it so hard.  You don't have to.  Remember, Jesus has already defeated it.  The pain will hurt you, but evil can't."  Her eyes shot open, and I think she would have bolted straight up if she could have.  "You're right.  I've told people that myself.  I remember now."  She relaxed.  What to remember.  What to forget.  What a hard and ever-changing task that is.  When you are also going in and out of your own mind, it must be nearly impossible. 

 

--Richard R. Guzman     

Update 10/12

Hello All—

Kari slept through a lot of the day on Saturday and got up around 6:00pm to eat dinner and visit with our friends from Brookside that had driven out for the weekend.  She knew who everybody was, but couldn’t really make much sense when she talked.  She slept about half the night, and on Sunday Kari got up for a few hours around lunch but was a little more “out of it.”  That evening though, she got her first full night of sleep that I can remember since coming to Craig and we thought that the new medicine that she took was doing its job and allowing Kari to rest.  Monday during the day though, she started to get a little paranoid because she was mixing up what she saw on TV and her pictures on the wall with real life.  Since Monday morning, she’s been even more out of it and has had more trouble sleeping.  About the only thing she can do is recognize who people are, although she goes in and out of knowing where she is and almost never is able to speak clearly.  Kari also hasn’t been out of bed since Monday afternoon except for the shower that she got yesterday.  She didn’t sleep Monday or Tuesday night, although she slept for a few hours here and there during the day.  Today, she’s gotten about 3 hours of sleep, on and off, but she is awake now and panicking.  She knows who everybody is, but has almost no ability to make coherent sentences.  I guess she’s actually been a little better today than yesterday, but still not good.  Her spasms seem fine during the day, but last night were particularly frequent (from every 20 sec. to about every 5 min) and she has started to get some tonight.  I can’t understand why she feels like she absolutely needs to say what she’s saying, and when no one can understand her, she gets upset.  Sometimes the best thing to do is just let her scream or babble because if I try to interpret what she’s saying it just gets worse.  It worries me that she is still so far away from being normal, but Dr. Balazy seems not to be too worried and says that this is not an abnormal reaction to the types of medicine that she’s on.  I don’t think he ever sees her at her worst though, but even when I do explain it too him he seems to be okay with her condition.  As of yesterday, he’s started to back her off some of the more sedating medications she has and he expects her clear up in a few days.  It’s very hard to believe what anyone says at this point, but I hope he’s right.  As for how he thinks she got like this in the first place, check out the middle paragraph on the posting titled “Update 10/01 (12:00pm).”  Anyways, the one good thing that has come out of this is that her shoulders and neck have seemed to loosen.  PT and OT report her having much better range of motion and much less pain, so I’m glad about that—I just hope that soon she’ll have her mind in good order and not be in excruciating pain.  I don’t know which one is worse than the other—they both stink and are both the most frustrating and maddening things I have ever dealt with.

The doctors have pushed back our expected return time to the first week of December.  It doesn’t surprise me, though.  I looked back on my blog posts and realized that there really hasn’t been a time since we got here that Kari has felt good.  After reading through the blog entries, I realized that we’ve been writing about Kari having pain in her shoulders for over 2 months and fevers, intense stomach pain, and nausea along the way too.  Just after Kari got here, she got a blood clot.  Then it was stomach pain and fevers from infections along with increased anxiety and shoulder pain.  Just as she was “turning the corner” on her infections, her shoulder pain got even worse, and then even worse again.  Finally, it was just too much for her and it’s been two weeks now since she slipped out of reality.  Its ridiculous if you look at the number of times in the blog that it says “it looks like Kari coming out of…..” or “Kari seems to be doing better now” or “Hopefully the next few days will be good” or something like that.  It feels like we’ll never get out of here or even over to the East side of the hospital.  Thanks for all your support and prayers though—at least we know we’re not alone.

P.S.  If you’ve sent an email through the website to weloveyoukari@msn.com, we probably haven’t read it yet because Kari hasn’t felt well enough to read since about the middle of September.  I promise we’ll get to them though, so keep writing.  If you need to contact me about something, send it to my personal address.  Also, you will soon be able to order bracelets through the website or get them from Brookside Free Methodist Church in Redlands, CA or St. Charles Free Methodist Church in St. Charles, IL.  Details in about a week or so.  If you are connected to the middle school bands in Riverside, you’ll be able to get them at the Band Extravaganza event on Wed. 10/19, provided that the bracelets arrive on time.  

Update 10/7 (TGIF)

Hello All—

I was so afraid to come to the hospital this morning.  Kari’s condition was so bad last night and I could hear her screams in my head as I walked over from the apartments that I dreaded stepping on to her floor.  When I walked in, though, I found her alert as they were getting her up into her wheelchair for the day.  Kari’s mom, who is spending nights with her, said she finally went to sleep around 6:30 for a few hours and then ate breakfast.  Brea, her tech (check out the “meet the Craig Hospital staff” link on the website) wrote down Kari’s quote of the day that she said when she woke up:  “I remember everything I forget.”  Kari said that she remembers being crazy last night, although not all the details.  She explained some of the things she was trying to say to us, but just couldn’t put into words—amazing because to us she had no Idea what was going on.  

After the worst night ever, we probably had the best day ever.  Kari got up in her chair around 10:30 and stayed up for 9 hours, a new record for her.  She had a good PT and OT session, ate a full lunch, and then we went to see Randy Snow, the first Paralympian inducted into the Olympic Hall of Fame, speak in the gym at Craig.  Kari was still really groggy, but enjoyed hearing him and seeing a very successful businessman, athlete and speaker who is paralyzed. (Although he’s not a quad.)  After that we went outside where they had refreshments and sat by the small pond near the back patio.  We went back inside around 3:00, but Kari was still feeling good, so we got permission from the nurse to go off campus.  It was the first time we’d been off the hospital grounds without the whole crew of nurses and techs that they take on the outings.  We went up to the top of the parking garage across the street, where there is a great view of the mountains and lots of room for Kari to practice driving.  Without anything to be afraid of running into, Kari drove pretty fast and got some more confidence in her chair.  I got some video clips of it too, which we’ll try to put on the website soon.  After hanging out in the sun up there, we drove over to Swedish hospital to visit some of Kari’s old nurses from the Critical Care Unit where she was from July 17th – 29th.  The only one of her nurses that was there was Melissa, so I showed her her old room and the waiting area where our families lives basically stopped for two weeks.  I showed her the couch on which we took naps and th corner where we stashed all our food and stuff.  As I took her past some of the rooms, she was wowed at the amount of tubes and machines hooked up to the patients, and I explained to her that she used to look like that.  It’s been a road much harder than I could have imagined, but we’ve come a long way.

We went back through the tunnel to Craig, got dinner in the downstairs cafeteria and brought it back to our room.  She kept forgetting to chew her food because she was so drugged up, but she ate a ton.  Afterwards, we went to get some more food at a going away party for a patient on the east side, and Kari saw a baby there with whom she was completely enthralled.  Now that Kari’s on so much medication, she basically says whatever she wants, and she was making faces and gestures to the baby for about 5 minutes.  In fact, the whole day, she kept spacing out, but she wasn’t panicking, so the medication seems to be slowing down her mind a bit, which is what we were hoping for.  After a full day, she had her shower and went to bed.  After not having spasms or needing pain medication all day, she started again when she laid down, but after about an hour of it, she went to sleep until about 2 am.  (I went back to my room to get something, fell asleep and then woke up a little bit ago, which is why I’m doing this post in the middle of the night.)  Since 2am, Kari has been waking up every 5-10 minutes or so and having spasms, but not as violent as last night.  If last night hadn’t happened, I’d probably be pretty worried right now because she’s very confused and is talking nonsense again. I know, however, that she’ll come out of it, but it still hurts to see her like this.  Hopefully she’ll get in another long period of sleep before morning and we can finally get her on a day night sleep schedule.  Thanks for keeping up with us.  I saw a ton of comments and got a few phone calls today and I know that a lot of prayers were offered up for Kari today.  Seeing how well she did restores my faith a lot—I was getting so discouraged.  Thank you for contending for her and for me.  

Update 10/6

Hello All—

Well, this is the worst night yet.  After having a good morning, Kari ate lunch with us and I took my dad back to the airport.  When I got back to the hospital around 2:30 Kari was sleeping.  She had done so well with her PT in bed this morning and was totally normal mentally so we were planning on getting her up in her chair for a while.  She had much less pain and spasms too.  Around 3:00 Kari needed to be turned, so I woke her up (we try to wake her up first so we don’t startle her) to see if she wanted to stay in bed or get up and drive around like we were planning.  She was totally incoherent—even more so than before.  Usually she at least can somewhat listen to what people are saying and eventually can follow a few instructions, but this time she didn’t even know who she was.  She screamed and thrashed around in her bed for about an hour, spasming so violently that she kept hitting herself in the face.  Finally, she went to sleep and slept soundly until 7:15.  When she woke up she wasn’t any better.  For the last four hours, she has been screaming complete nonsense, repeating the last words she heard over and over again, constantly yelling obscenities (which if you know Kari, you know it’s the first time I’ve heard her talk like that) and trying to bite her hand when it flies up to her mouth.  It is so frustrating and it gets scary when she wants to shake her head violently back and forth.  We know that if she would try to relax and do the kind of breathing that my dad had worked with her that the spasms would decrease, but she is not able to make sense of anything that we say.  She just holds her breath for a few seconds and then lets out a loud scream and thrashes around.  This is the worst and most “gone” she’s been-even worse that the first night this all started.  Her whole body just trembles, and even when she doses off for a minute or two, her face is all contorted like she’s crying out in pain.  

I feel like I should add a closing paragraph here where I try to make sense of this all, but to tell you the truth, I don’t think there’s really anything else to write.  I just can’t tell you how much I hate this.  At this point, I don’t really even care if Kari ever walks or uses her hands again; I just want my wife back and for her not to be in pain.  It makes me so angry and frustrated that Kari won’t listen to me or her mother (who’s here with me now), and I can’t figure out why she would want to hurt herself.  It’s like I’m watching her stab herself with a knife and she refuses to stop.  We’re trying just letting her go right now because nothing that we say or do has any effect on her.  She refuses to even drink any water and just bites on the straw.  Pray for me too.  I’d choose just about anything else in the world than to watch Kari go through this.

Aaron.

Update 10/5

Hello All—

Some more ups and downs the last few days.  Monday and Tuesday were basically good days.  Kari got up and went around in her wheelchair to therapy and to eat, which was more than we were expecting after the weekend.  She was coherent and able to speak most of the time and only mixed up her words when she got really tired.  The big problem is that she did not sleep very much the last 7 days.  She got as little as none, and as much as 3-4 hours a night broken up into hour or hour and a half intervals.  She is so exhausted that she can’t stay awake, but so wired from all the medication and full of anxiety and worrying that she cannot sleep.  Yesterday, she tried to drive her wheelchair back into the room and she messed up and rammed into the door.  With the breath control wheelchairs, they keep moving until you give them the stop command, so the chair’s front wheels lifted up into the air as it kept pushing into the door.  When I put the chair in reverse, it slammed down onto the ground and Kari’s head (not in the collar at the time) bounced forward and back pretty hard.  We don’t think she hurt herself at all, but it gave her a pretty good scare, and they took x-rays this afternoon to make sure there was no damage done.   This morning, though we had another scare.  When I walked in, Kari had just woken up and she did not recognize me again.  I can’t tell you how scary that is.  I was leaning over her bed trying to talk to her and she turned to her mom and said “I don’t know who that man is, but he sure is handsome.”  I showed her pictures of her and I and she asked me who the girl in the picture was and said that the boy looked like me.  After getting out the mirror, and talking with her for about a half hour, she eventually came to and was normal again.

She has still been having a great deal of pain from all the spasms.  I’m not sure if they are getting any better, but her muscle tightness seems a bit less.  Even though she slept through it, she was able to move around in therapy a little on Monday and Tuesday.  Today she was doing a bit worse and we had to cancel her appointment with the technology clinic and other therapists.  Based on the fact that she still can’t go to sleep, even with the heavy doses of pain medication and muscle relaxers, the doctors have decided to try a new drug, Risperdal.  Kari mind hasn’t really allowed her to sleep because she can’t stop thinking about things.  She will be almost asleep and then will pop her eyes open and start talking about some random thing that pops into her head.  Risperdal works by blocking chemicals in the brain that help us think fast.  The hope is that will allow her to get some good sleep and break the cycle of pain, anxiety, panic, and restlessness.  They expect her to come out of it by next week.  Anyways, Kari has been asleep the last 4 hours, but she is awake now because she had to be turned.  Hopefully, she’ll go back to sleep for the rest of the night.   Anyways, I’m going to go to bed.  I can’t wait to come home.

Shalom.

Aaron.

One Mind

Early Saturday morning I took off in the van that
was donated to Kari and Aaron. (More about the
vehicle later!). I arrived late in the evening. "I
love you. You've come here so much," she said when I
walked into her room. She remembered that Linda
couldn't come because when the accident happened she
had taken an incomplete in the last class she needed
to finish her degree, but now was up against the
deadline to make up the work. She asked about Daniel
and Bryan and a few more things. Aaron wanted to see
the van, and as we walked out to it he said that that
was the longest, most coherent conversation Kari had
had in three days. He and Jan Yessa were both
exhausted, so I am glad to be able to stay the night
tonight so they can both get some rest.
Kari still struggles to find some words, and gets
things mixed up now and then (and now and then it's
funny and we all laugh at it!), but she is doing so
much better these last few hours. She worries about
doubting God and not being good enough and that makes
everything harder on her. Hopefully, she'll work
through these things as we talk to her and tell her
she's OK--all of her, even her doubts.
The pain in her arms, especially the right one,
continues and is sometimes so intense that she has to
bite down on a towel. Yet I noticed that when her arm
went into a spasm she wanted people to hold it down
really hard. We're trying something new, and it seems
to be a little better. When the arm spasms, I've
tried to tell her to let it go, not fight it, and
breathe with me deeply in rhythm. Fighting it, the
intense pain would last 30-45 seconds, but going with
it seems for now to have reduced the time to 10-15
seconds. "It's like Lamaze, Kari," I said. She asked
a nurse who was standing by, "Have you ever had a
baby?" "Yes, dear," the nurse replied. "Does it hurt
as bad as this?" "I don't know, I've never had arm
spasms, but I think probably having a baby is more
painful." So I'm thinking that if Lamaze can help
with that, it can help with this.
Very early on, I remember how she fought so hard
against the ventilator and the tubes--so hard that
they had to put blocks in her mouth and her brother
Dustin had to get pretty severe with her. It's a
theme we come back to again and again: letting go, not
fighting things, relaxing. So much, much easier said
than done, of course, but we can all see the truth in
it. The physical pain is still there and very
intense, but not quite as much if we can let go more
(again, easier said than done). Sometimes we can even
cut the severity by half or two-thirds. Spiritually
we have to let go of feeling we're not good enough,
feeling that our doubts are things we can't have.
Worry, too. Sometimes when Kari is only on the edge
of coherence she's kind of free to say anything that
pops into her head. "You have such a deep line in
your forehead," she said to me last night. "Now Kari,
let's not focus on Dad's forehead so much," Aaron
said. "But it's so deep," Kari continued. "Richard,
how did it get so deep." "Worry," I said. "In fact,
I've had it since I was a little kid." I have, too,
and these days when I see it in a mirror it's become,
ironically, a sign which helps me worry less--though I
still do plenty of it.
When you pray for Kari please pray that she can
relax and let go, physically and spiritually. Imagine
peace and sleep and laying down of worries and other
burdens. Feel these things flowing through her mind
and body: relaxation, letting go. But as I write to
ask you to pray and imagine this for Kari I feel even
more strongly that we feel all this for ourselves too.
We are one mind and one body and one spirit, and
tonight this means to me that we can all pray for and
feel this peace and relaxation and letting go as one
people, all of us praying and thinking one set of
thoughts. What Kari is going through has made me feel
how much we need peace and rest and letting go both as
individuals and in what we are as one mind, one body,
one spirit together. As often as you think of her,
pray for peace and letting go.

--Richard R. Guzman

Update 10/01 evening

Hello All—

Well, it’s been a long day, but things are looking better.  Kari slept from about 12:00 to 2:00 and then woke up and was doing better.  Still not able to talk clearly, and less yelling of the nonsense, but she was still not normal.  She ate a small lunch and recognized me.  We were able to have a very broken conversation, but the longer she stayed awake, the worse she got.  By 4:30 she was yelling and shaking violently again.  Jan (whose house we had our wedding reception at and who took us on the “Dead tulip Festival” that is in the pictures section) must have the magic sleepy touch, because after 2 hours of trying to get her to sleep, which was very frustrating, Jan walked in and 20 min. later she was peacefully asleep.  I went out to grab dinner and returned around 8:00 to find Kari almost totally normal.  Very groggy and still fishing for some words, but definitely “all there” and able to have a normal conversation.  She started to wear down around 10:30, slipping back out of reality when she had spasms or pain.  It is now 12:30am, and Kari seems to be getting back to sleep.  For the last hour she hasn’t made much sense, so it seems pretty obvious to us that what Dr. Balazy said is right and that she basically couldn’t handle things anymore.  It’s the body’s way of screaming “get more sleep!!!” at you.  She usually does great after long periods of sleep.  Anyways, my dad arrived today with the van that was donated to us, and it looks like it will work fine for us.  More pictures will be on the website.  If you haven’t noticed, the website had a major overhaul which I think looks great.  There’s a nice picture on the opening page.  Also, if you have time, read about John and Cyndi’s visit.  It will give you a better Idea about the day to day activities and has some great pictures on it.  Anyways, I’m falling asleep here, so take care and thank you for praying.

Aaron.

Update 10/01 (12:00 pm)

Hello All-

10:00 am  
I wish I had better news.  I actually talked to Kari on the phone around 2:30 yesterday, and she seemed groggy, but she was fairly normal and able to carry on a short conversation.  When I returned to the hospital around 3:30, she was sleeping and I expected that woke up she would be back to normal.  Around 4:30, the techs came in to take her vitals, and she woke up and started panicking again.  Her spasms at that point got worse, and she started screaming and “help me” along with a mix of syllables and sounds that did not make any sense.  She eventually did relax though, and Kari slept through most of the evening last night, from about 7:30pm till 11:00pm.  After that she slept on and off until 6:00am, waking up when they needed to turn her or take her vitals.  Since about 7:00 this morning, Kari has withdrawn even further.  Her spasms are incredibly strong, about as strong as I could clench my arm, and she has started biting down and locking her jaw.  She bit her lip so hard this morning that it bled.  Luckily, Jan Yessa from our old church in St. Charles, IL, was here and she stayed the night with Kari.  I got my first real sleep since Tuesday night.  When I got to the hospital around 9:30, Kari did not totally recognize me.  A few times, she asked me to help her, but she did not respond at all to me speaking to her.  She is becoming very frustrated with her collar and even pushed it off with her jaw.  Technically, she is allowed to have her collar off, but she is shaking her head and neck back and forth so violently that it would be unsafe to leave it off.

As for the plan of attack, Dr. Balazy was in to see her this morning and I spoke with him about half an hour ago.  The plan to use a combination of muscle relaxers, anti-anxiety and anti-spasticity drugs to try to calm her down and get some rest.  If that doesn’t work soon, which it looks like it isn’t, they will try anti-psychotic drugs.  The hope is that by allowing her brain to relax, they can gradually bring her back to normal.  Dr. Balazy said that he expects her to come out of this, but it could be a couple of weeks.  The anti-psychotic drugs have some possible side effects of making it difficult to control her movements.  I asked him how he thought she got like this, and he believes that she simply reached a breaking point on both a physical and emotional level.  The intense pain for the past two weeks and really for the past month has just been too much for her and she has withdrawn from reality.  Having your muscles being continuously contracted never really allows you to get any good sleep.  Combined with not sleeping at all Wednesday night and the increased spasms, it made Kari feel that she had even less control and raised her anxiety.  By Thursday evening, she just couldn’t take it anymore.


12:00 pm
Well, I got interrupted while writing this entry and by now I have a little bit better news.  Kari can now recognize me and at one point was able to name everybody in the room.  She even asked to give everybody a kiss!!  Even though she’s still not all there, she’s still a sweetie.  Anyways, she’s asleep now and looking very peaceful.  I’m hoping and praying that when she wakes up this time it won’t be like yesterday.  She usually gets scared when she gets woken up suddenly, so we’ve told all the nurses and techs to try to wake her up gently.  They usually try to do their thing without waking her up, but if she does wake up, she’ll probably freak our again, so we’ll see how this works.  I know that many of you have been praying, and we need it now more than ever.  Thanks.

Aaron.