Wednesday, November 30, 2005

Update 11/29

Hello All—

Kari had her second set of casts put on her arms Monday and the process seems to be going very well.  The whole thing should be done on Dec. 12th or 19th, which puts our release date on the 20th or 27th, which is more in line with where we were thinking before.  Maybe we’ll be home for Christmas, maybe not—it doesn’t really matter to me, I just want to go home sometime.  We’ve also found some nurses and techs that we like on this side and that has made life more enjoyable.  We still miss our old staff, but many of them have come by to visit, which has been nice.  The nurse today and the tech tonight talked a lot about the different things they need to teach us before we go home.  After being in limbo for so long it’s sort of scary to think that we’ll be going home in 3-4 weeks.  We left California on July 13th, and while I’ve been back for a total of 6 days, Kari has been gone now for 140.   There is so much to do to get ready to come back.  My biggest concerns right now are that we’ll have all our equipment on time, that the apartment management will help us modify the bathroom to put in a roll-in shower, and that we’ll qualify for Medi-Cal and In Home Supportive Services (IHSS).  So far, we’ve been too “rich” to qualify for anything but disability, but I’ve learned a little about the process and am going to re-apply.  I’m not sure what we are going to do about home health care if we don’t get IHSS.  The system is such that I’d be better off making a lot less money.  Anyways, pray for a softening of heart for the manager of our apartment, for quick processing of all our equipment orders, and for favor with the person that reviews our Medi-Cal and IHSS applications.

After being sick for about the last week, Kari had a better day today, but in the evening had a lot of stomach pain and spasms as well as extremely high blood pressure.  At one point it was 203/97.  The doctor wasn’t exactly sure what caused it because it didn’t look like autonomic dysreflexia, so he prescribed some new medicine.  The best news, though, is that Kari got her trache tube removed today!  It looked pretty weird when they took it out because there was just a hole in her neck.  I showed it to Kari in the mirror before they bandaged it up and she thought it looked weird too.  Because she had her trache for so long, it may take up to 3 weeks to totally heal.  Tomorrow she is having her vena cava filter (helps prevent blood clots) removed, and after that the only thing left to go is to take out her g-tube, which goes into her stomach.  I still can’t believe that we’re actually leaving in less than a month.  Part of my brain is telling me that it won’t happen anyways and that something else will come up, but I’m trying to be optimistic.  We are still on for another month this summer, but can’t wait to get back home and get back to work and school.  

P.S.  Gage people be proud—I played our tech a recording of my orchestra and she was floored by how good it was.

Friday, November 25, 2005

Update 11/25

Hello All—

It’s been a long time since I’ve written—two weeks exactly, and a lot has happened.  For starters, the feeling that has returned to Kari’s feet and legs is still there, but it is not normal or consistent sensation.  I still can’t tell if it is more of a “phantom” type of feeling that works sort of like nerve pain, or if it is more just reflexes and spasticity, or if it is regular feeling, but because of the injury it doesn’t feel normal.  Sometimes when I have her close her eyes she can tell me where I touched, but sometimes she gets it wrong, and sometimes she tells me I’m touching her when I’m not at all.  At any rate, the feeling isn’t as painful as it was when it first started coming back.  On Monday, Kari started the process of casting her arms to try to straighten them.  During the 40 days that Kari was out of it mentally, the spasms in her arms were so bad that they becamed locked at about a 90 degree angle with her palms facing up.  The muscles and tendons had gotten so tight that it was impossible to even try to stretch them.  The point of the phenol injections that she had last Thursday was to try to relax her arms so they could start stretching them out.  The casts that they put on are plaster and go from her shoulder to her wrist on each arm.  The bottom of the cast is cut out so that in PT and OT her arms can still be stretched, but the top of the cast prevents her from flexing at the elbow.  The people doing the casting say it will take 4-5 weeks to complete the process.  Of course originally they told us 2-3 weeks—I think the person doing the casting took about 5 minutes to say 4-5 weeks because she knew we were hoping to go home sooner.  Kari had to ask her 3 times until she got a straight answer!  I’m beginning to think its impossible to get a straight answer from anyone around here.  Anyways, the 4-5 week timeline puts our release date to somewhere around January 5th-10th, which is about 7 weeks past our original release date.  Even with all the extra time, we will still probably have to come back to the hospital this summer for another month to finish all the things that they didn’t have time to do while she was here.  It’s normal to come back for a re-evaluation in 6months, ours will just be longer.  I’m actually glad that they are planning to do it that way, because the both of us are starting to just hate it here.  Even at a good hospital like Craig, there are people that don’t know what they’re doing, or just don’t listen very well, or have really bad bedside manner and are just annoying to deal with.  I think that the doctors and therapists are good most of the time, but the nurses and techs are hit and miss—some are great, but sometimes you can get one that isn’t.

The other big thing that happened is that on Tuesday we moved over to the east side.  It’s nice to have everything all in one place and to not have to go back and forth between the apartment and her room.  It’s also nice for visitors because it isn’t so cramped in here anymore.  There are a couple of drawbacks, though.  I was getting pretty used to my nice spacious apartment and bed, and here there is only a sleeper sofa, no stove and only small fridge.  It’s pretty cramped with all of our stuff.  We’ve gotten so many things and brought so much stuff here because of the long stay, that it doesn’t really all fit in the room.  Also, other than the room, its really not different from the other side, so there isn’t a lot of privacy, (we can’t lock the door) and people are always coming in and out—not any time to watch TV in your underwear!  Okay—I think I was just a little spoiled having my own place for 4 months.  Hopefully the staff here will learn Kari’s needs quickly—its been difficult to leave the staff over at the West side (at least the good ones.)  From first impressions, the staff here seems not as good as the other side, but hopefully it’s just because they haven’t had her before and that it will get better the longer we are here.  Still though, I’m glad to be over here even if there are a lot of annoyances to moving.  It seems like a step in the right direction—if not medically, at least in environment and attitude for Kari.

Kari spent Thanksgiving and the night before throwing up and having “the runs” until the after noon.  It was the first time she had stayed in bed all day for a while.  The test for “c-diff” the stomach infection that she’s had now three times came back positive, and its been causing her a lot of pain and cramping in her stomach.  She seemed to feel better last night and this morning, though, so hopefully she’ll be over it fast.  We are cooking Thanksgiving dinner today in a special room that they have for families to entertain here.  My mom and Bryan flew out yesterday and our friends Nate and Joy Cox are here from St. Charles visiting too.  Anyways—I gotta go to the grocery store—hope to see you soon.


Saturday, November 19, 2005


     It's very early in the morning, but I think I'll share something I've hesitated to share since it happened.  In short, this afternoon as Kari's legs were being stretched, she actually felt her muscles stretching, and all evening has had feeling returning to her rear end, parts of her legs, and especially to her feet.  Though the feelings are still quite spotty, what's come back isn't just feeling pressure either.  She can feel temperature and specific touch.  I can scratch her feet lightly, even through socks, and she can tell where--and, well, it tickles.
     Of course, I hesitated to share this because I didn't want to get up any false hopes.  It might go away tomorrow.  More important, feeling returning doesn't mean that any more movement or function will return to her legs.  It's a necessary condition, but NOT sufficient.  Yet everyone else here is happy, including nurses and doctors.  Some are ecstatic, flashing thumbs up everywhere and saying over and over, "This is a good thing, girl!  A good thing!"  So I figured we ought to join them.  You don't want to let your guard against false hope keep you away from hoping and being thankful, and sometimes it does.  It's too complex to get into here, but outside of really obvious instances, I sometimes think the distinction between false and real hope isn't ever very clear anyway.      
     Also, I thought how this shows how we can both hope and still be pulled down by the gritty realities of things.  "This is really scary," Kari said.  "It's so weird to feel my feet again."  Though she was so happy and we called Aaron as soon as we could, the reality is that regaining feeling has made her much, much, much, much more uncomfortable physically.  Her legs and feet hurt a lot, burning and aching as I described in the last post.  She's become hyper-sensitive to the touch, and the new feelings set off spasms much more easily.  It's almost impossible to feel her whole lower body, especially her legs, is ever positioned right, and it's doubly, triply frustrating to feel them and not be able to move them.  "I just have to move them; they hurt so much," she has said over and over.  Yet, of course, she can't move them.  Tonight the pain and frustration has made it hard to get to sleep again, and her fear level is spiking, because she and everyone knows what pain and lack of sleep did to her for six weeks.  It's now past 2:00 a.m. and she's kept tossing and turning and moaning.  So out here we are at it again: rejoicing and being truly thankful on the one hand, yet feeling reigned in by the minute by minute realities of pain and frustration and fear.  Sometimes I've thought that if we were really thankful we could just rise above those other things easily, but that doesn't seem right and certainly not real.  Better than talking about false hope might be distinguishing between easy and hard hope, or even cheap and costly hope, somewhat like when Dietrich Boenhoeffer (sp?) distinguished between cheap and costly grace in "The Cost of Discipleship."  The first, he said, was the real enemy of the church.  As always, we covet your prayers.
--Richard R. Guzman           

Friday, November 18, 2005

Making Progress

     While Aaron is in Kentucky for his grandfather's memorial service, I'm happy to be back in Denver again with Kari.  Aaron just sent two dozen roses to Kari, complete with an "I love you" balloon, and so I'm ducking out to do a quick update while one of Kari's OT's is putting them in a vase for her just before they have a short therapy session.
     Aaron calculated that Kari was in her confused mental state for 40 days and 40 nights, and we are all glad to be out of that dark night.  Weeks ago, as she was slipping into that state, I remember that we were lucky if Kari slept for more than 30 minutes at a time, so the other night when she complained about only getting 4 1/2 at one shot, I reminded her of how just a few weeks ago I saw her get just 6 hours of night sleep in four days!  She's been sleeping fairly well since about last Monday now, and it's a night-and-day difference, of course.  Her main doctor is also trying to be very, very minimal with drugs.  "We don't want to take a chance of influencing your mental condition again," he said this morning.
     He might have to, however, though he's holding off.  Kari still has painful spasms, this time centered more in her legs and especially in her stomach.  There's nothing much anyone can do with the stomach spasms either, but the thought seems to be that these spasms are temporary and that she can work through them.  "I'm tired of working through things," Kari said this morning, but, of course, she gritted her teeth and worked through them and seems to be able to keep on top of things.  Her jaw shakes and shivers with pain sometimes, though, and a couple of days ago her right foot shook so violently that it rattled and swayed her wheelchair, which weighs about 300 pounds!
     Yesterday was a very rough day because she had four phenol injections, two in each arm, one in the bicep and one above the elbow.  They sent electric pulses down the arm to locate each nerve precisely, and the whole thing put her in excruciating pain and increased her spasms all afternoon and all day today.  She says her whole body feels like when your legs are coming out of being asleep, all electric and spikey and buzzing.  Phenol is a form of botox, and they gave her the shots to weaken her bicep muscles, which have became so strong that they overpowered all her other arm muscles and prevented her therapists from efficiently strengthening her other muscles, like her shoulder muscles.  They had become almost locked up lately, too, so that her arms were almost always folding, palms up, against her chest.  "No more chicken-wing arms after this!" Amanda, her regular OT said.  Amanda said that she had wanted to have the shots a month ago, but Kari's mental state took priority.  Now Monday they will stretch out her arms, which are still locked up, and then they will do some serial casting, putting her arms in drop-out casts which will allow her to extend her arms downward, but not fold them up.  They want to get her palms turned downward, too.  With arms outstretched and palms down, they will achieve a more functional arm form, and with more therapy Kari should be able to do things like feed herself with her arms and hands in that position.  The arms, though, are still very locked and very painful, so she has a lot to get through again.
     Still, everyone is so positive and happy to have her back.  That goes for other patients and their families that know her here too.  And Kari's basic health keeps improving and getting more and more solid.  There is talk now that perhaps next week they will remove the trache tube.  Heidi, one of her respiratory techs, thinks she's ready now.  "I'll hug you so big when you get that thing out next week," she said this morning.  They also talk about moving her over to the east wing next week.  "Your health is getting way too good to be over here much longer," Dr. Balazy said this morning.  He and her psychologist said it was also time for her to start being a resource for them, talking to other patients and encouraging them.  Her psychologist said that since that was what she was good at, she should get back to helping the other patients here as soon as possible.  There's still a ton of pain to get through, and when I go back in a minute I know she'll be shaking with it until she recovers a little from her therapy session; but she's also gotten through so much already that that can't help but inspire others.  You can picture it, can't you?
--Richard R. Guzman 

Friday, November 11, 2005

Update from California Trip

Hello Again—

If you haven’t read the previous update—I just posted it late last night—read it first.  Anyways, my trip to California was exhausting but good.  For starters, I found an apartment.  It will still need some bathroom modification, but everything else is good.  It’s right off the 215 on Quail Run Rd. in Riverside, about 5 miles from my school.  It’s a great location and is set in a little bowl in some rocky hills.  It’s brand new, so our move in time of late December works well for them.  I also got to see many of my former students at a field tournament on Saturday night.  A bunch of them met me and the high school director at Starbucks afterward and had a good time just goofing around.  Sunday I spent at Church and got to see everybody for the first time in a while.  Please keep praying for our friend Melissa Logan, who I also got to see.  It’ll be nice to come home because I know that Kari and Melissa are dying to see each other.  They have been on this rollercoaster since January and have been a great support to Kari and me.  It’s horrible, but I’m thankful for someone that understands.  

Also on Sunday, my mother called me with the sad news that her dad had passed away.  My grandpa was ready to go to heaven though, and I’m sure the Lord was ready to have him.  He was 93 and had just moved to a nursing home a few weeks ago.  He was not on any medication and just died of old age.  The thing I remember most about him was the story he always told about moving to the desert as a young man.  He said he wanted to “get as far away from God as possible” so he moved to the desert in Southern California.  Shortly afterwards, a Sunday school and church opened up right next to where he had moved.  God continued to pursue him and he eventually became a Free Methodist Pastor (like Kari) When I was little, I used to get tired of the story, but as I got older I began to appreciate it and him for his life of service to God.  I viewed his faith as pure uncomplicated, not because he had not endured a lot of things, but because he eventually just surrendered to the God that pursued him and who he could no longer deny—refreshing in a day and age that tries to make God into so many things other than what he is: God.  I’ll be traveling to Kentucky for his memorial service Thursday through Saturday.  

Monday I went to Gage and got to listen to my band.  I must admit I was nervous to go there after being so far away, but I calmed down and was able to enjoy seeing the kids and fellow teachers and staff.  In the afternoon I wrapped up things with the apartments and went home.  I Can’t wait to go back.

Thursday, November 10, 2005

Update 11/10

Hello All—

I haven’t written in a while because things have been so busy.  A lot has changed since our last update.  For starters Kari has made a lot of progress and is even sitting here following along as I write this entry.  The sleep doctor came on Friday, and while I was in California, they were trying (again) to keep Kari awake all day until 2:00am and then have her get up by 9:00am.  They also took Kari off all sleeping medications.  Friday and Saturday we tried this, but Kari got so agitated that by the time 2:00 rolled around she was in too much of a state of panic to actually sleep.  We also had a major issue with one of Kari’s nurses while I was gone.  Basically what happened is that Kari was in a lot of pain and was asking to go back to bed around 10:00pm or so.  The nurse wanted to push Kari to stay up until at least midnight, but Kari didn’t want too and asked if she could talk to a doctor to explain why she wanted to go back to bed because the nurse wouldn’t let her.  Rather than honoring Kari’s request, she reiterated that Kari had to stay up until midnight.  At this point, Kari started to panic because she was in a lot of pain.  Cyndi, Kari’s sister, explained the situation to the nurse and the history of Kari not sleeping and being anxious.  She again refused.  Basically she just wasn’t going to listen to the family or Kari because she assumed that she knew best, even though Kari was in obvious pain and had asked twice to go back to bed.  She wasn’t even Kari’s regular nurse!  I understand that the staff here at Craig wants to push the patients to go as far as they can, but at a certain point you have to listen to the patient.  I don’t think she was malicious, but if she had really listened to Kari or Cyndi this wouldn’t have happened.  Weather its arrogance, negligence, or just insensitivity, the outcome was that Kari had to suffer more pain and anxiety.  I had been on the phone with Cyndi through some of this and when I heard what was going on, I got the nurse on the phone and screamed at her.  Kari was put back to bed immediately.  Just to wrap up the story, I met with the director of nursing, the nursing supervisor, the nurse, Kari, Cyndi (over the phone), and Kari’s mom to try to figure out how a nurse could be so irresponsible.  All of us (family) feel that the nurse never was totally honest with what had happened.  She stuck to her story that no one had ever asked her to put Kari to bed and anytime she couldn’t explain something, her memory was conveniently fuzzy.  At first she didn’t even acknowledge talking to Kari at all.  Anyways, to make a long story less long, we met for over 2 ½ hours and by the end of it I was satisfied that the directors understood what had happened.  I think the simple fact that they were willing to meet for that long says a lot about how much they care that things are done right.  I’m still going to file a grievance for the nurse’s dishonesty and misconduct, and I know the supervisors have talked to her about her mistakes, so I guess it’ll have to end there.  

Anyways, it looked like the two days of sleeping that we had gotten out of her on 10/30 and 11/1 were just flukes.  On Monday night, though, Kari got yet another kind of sleeping medication and actually slept through most of the night.  Again on Tuesday and Wednesday night she slept well.  In the last entry I wrote that we haven’t even seen what two nights of sleep in a row will do for her, but now we have three, and I can say that Kari’s mind is basically back to normal.  (Yeah!!!!!!) The thing that makes me confident that this time is for real, is that Kari now doesn’t remember a lot of things from the past month, and speaks of it like it was all a dream.  What she does remember of it she knows if it was real or a dream.  She’s not just clear headed; she can also speak clearly and doesn’t get mixed up with things, even when she’s tired.  Today we all went to the Ice cream shop again for lunch.  

In some ways, though, becoming more aware has been hard for Kari.  First of all, her muscles seem to get tighter the more awake she is.  More importantly, though, this has been the first time Kari has been well enough to really think about her injury.  First she was in survival mode, then just sick, then in pain, then delirious, and when she cleared up, it seemed like everything hit her at once.  She was defiantly sad to learn how hard these last 5-6 weeks have been.  Even though she knows it’s not her fault, she said she was sorry that it happened and that everyone was so sad and worried.  Anyways, we still have a lot more things to get through.  I also would like to thank all of you that decided to fast for us—I can never say for sure what brought Kari out of this, but I am thankful that it happened and if for nothing else, I know that your prayers have kept us relying on God, even if the path is not any clearer.  I think that any attempt to try to quantify or explain this whole situation is simplistic at best, and answers aren't really the point of life anyways—thanks for helping to keep us going.  

P.S. – I’ll write about my trip to California in a few hours here, but I gotta take Kari back to Craig (we’re at the apartment) for her shower.

Thursday, November 03, 2005

Update 11/3

Hello All—

Here’s the sleep update.  Kari slept Sunday night, none Monday night, the whole night Tuesday, and only about 2 hours Wednesday night.  Right now she is dozing off but waking up every few minutes because of spasms.  We had a very good day, though.  Kari was confused a lot less today.  We did a couple of new things in PT (a sliding board transfer and stretching on the mat) and after OT we went over to Swedish Hospital to visit her old nurses.  Melissa and Kristy were both there and were very excited to see her and amazed at how good she looked—almost back to normal and not even wearing oxygen during the day now.  Kristy was the very first Nurse that Kari had and was there when Kari went into Surgery back in July.  Kari was  not 100% clear mentally today, but she was a lot better and told Kristy that it was “good to come back to visit to see how far you’ve come.”  After our visit we went around the corner to a little ice cream shop that has the best ice cream I’ve ever had.  It was our first time out by ourselves to a restaurant or store and was a lot of fun.  Kari even drank the espresso that they had there.  It was nice to be outside too.  After we got back, ate dinner and got her back into bed her confusion and anxiety started to increase again.  By about 8pm she had a hard time remembering anything we did today without excessive prompting and was getting very mixed up between what she was watching on TV and what she was doing.  As I’m writing this she has been waking up and trying to tell me something but not making any sense and panicking a lot.  It does finally seem like we’re making some progress, though, but it looks like night time will be hard for a while yet.  It is so frustrating how she can be nice and relaxed for hours and then all of the sudden going into extreme panic—shaking, screaming, begging for help, and not knowing what’s going on or making sense when she speaks. We still haven’t seen what even two nights in a row of sleep can do for her.  A sleep specialist is supposedly coming tomorrow afternoon, so we’ll see what he has to say.  Looking forward to being at church on Sunday and Lester Oaks on Saturday and seeing people in Cali.  I hope your fasting is going well if you are participating.