Saturday, December 31, 2005

Happy New Year!

Hello All—

Well, it was a long trip back but we made it okay.  The transfers from Kari’s wheelchair to the aisle chair to the plane seat and back were very hard, but we got them done.  We got to the airport 2 ½ hours early and had just enough time to do everything, and after we landed it took us an hour to get off the plane, get back into the wheelchair and get situated.  Sarah, who was driving our van back, hit some bad weather (and almost a few cars) and wasn’t going to be able to make it to the airport to pick us up as we had planned, and we left in the air without a ride home planned.  Luckily, we got on the phone with some friends of ours and they called a wheelchair minivan to come pick us up.  We had a little trouble locating the van and didn’t actually leave Orange County until almost 6:00.  The traffic wasn’t that bad, but the whole day had been so long that Kari was totally exhausted by the time we got there and threw up just after we pulled up to the house we were staying at.  She was fine, though, and we’ve spent the last few days just lounging around and recovering from the journey.

We are staying with the Logans, friends of ours from church and whose daughter Melissa is the one I have written about on the Blog before.  It has been nice to stay with them—a good transition before home and a family that understands what it is like to go through this type of tragedy.  We haven’t really done much except go to the church to get some stuff and to go and get ice cream and the break from the hospital schedule has been nice.  The last two days, Kari has slept until noon :)  I got a message from our apartment manager yesterday saying that we’d be able to move in on the 6th of January.  Once I know for sure though, I’ll write here to give anybody that wants to help further details.  Anyways, we are going to be at church tomorrow, (the address is the one on the donations page on the website) so I wanted to invite anybody that wanted to come to be there to.  Church starts at 10:30, and people usually get there around 10:00 to have some snacks and talk before church.

We are so happy to be home.  When we were driving around yesterday, Kari said “Man, I love California.”  We just love the atmosphere, the land, the weather, and of course all of our friends here.  It took us a while to get settled, but it truly feels like home here and we feel so great to be back.  We look forward to seeing friends here we haven’t seen in so long and also want to thank the many that came from our old home and elsewhere across the country to come visit us in Colorado.  

Happy New Year!


Wednesday, December 28, 2005

Leaving today!

Hello All—

I don’t have a ton of time to write, but I wanted to let everybody know that we’re leaving today from Craig at 11:30 and our flight leaves Denver for Orange County at 2:39, arriving at 4:00.  I’m actually getting a little anxious about the whole trip, but know that people are praying for us will calm my nerves for sure.  We had a little trouble getting our new van yesterday because the credit union that I was getting the loan from never told me that I needed to be a Colorado resident to get the loan, even though they knew I lived in California.  But we had some amazing people that helped us and we got it last night.  Sara (Thompson) left last night at 2:30am to drive it back, and two other men from our church left last night to drive my car back, so pray for their safety as well.  Needless to say, we’re tired from being up late, but excited to go home.  I’ll write again to let everybody know how it all went!  God bless.


Saturday, December 24, 2005

Merry Christmas

Hello All—

First of all, I want to wish all of you a Merry Christmas.  (I think the law states that I must start this message by saying “Merry Christmas.” There is so much good news to report since I last wrote two weeks ago.  First, thank you for all of the comments supporting us on the blog-25- it’s the most we’ve had in a while.  I think I was feeling the same about the blog as I was about the hospital—it’s amazing how a few bad people can really change the atmosphere of a place.  Over the last two weeks though, we’ve been able to focus on the people we normally work with and things we need to do to prepare to go home.  In our last meeting with our team, it was very encouraging to hear all the good things they had to say.  

I won’t go through all the details of what we’ve been doing for the past two weeks, but our major highlights include learning to use the bus system, going out to eat and going shopping, and taking a trip to the aquarium.  We have also learned a lot about airline and car transfers and how to travel home, and we both feel comfortable in making the trip.  It may not sound like much, but there were a few “adventures” in there.  On our trip to the aquarium, Kari had to drive over a mile through snow covered sidewalks and over a bridge on a major street over a river.  We also got stuck once at a restaurant because the route to the bus stop was covered in ice and snow.  The people at Craig had to call a van to come pick us up and we didn’t get home until about two hours after we finished eating.  Everything we do now is a new experience, and we’ve learned a lot just going out on our own.  We also bought an accessible van yesterday (even though it won’t be delivered until Tuesday).  The van that we were donated was having problems with the air suspension and it would have taken at least three weeks to get it fixed, so we decided that we really needed to buy one that we could trust.  Anyways, the dealer was able to bring the van out so Kari could get in it, and we both liked it a lot.  The one we are getting only has 9 miles on it, so we are exciting about getting our first new car!  Sarah is out here now visiting, and she will drive it back, and two other people from Brookside are coming out to drive my car home.  

We are flying home on Wednesday the 28th, and are frantically trying to get all the loose ends wrapped up before we leave.  Our apartment won’t be ready until at least the 5th of January though, so we’ll be staying with friends from Brookside until we can move in.  Even though we won’t be in our own place though, it’ll be great to be out of the hospital and back in California.  We’re going to be at church on New Year’s Day.  Even being only 3 days away, it is hard to think that we are actually going home.  We are excited about it, but a little scared for sure.  


Sunday, December 11, 2005

Bad comments...


The blog will be down for a little while, or until I find out who made the absolutely idiotic comments that I replied to on the last entry.  I’m sorry to all of you that are faithful readers, but comments like those don’t exactly encourage me to write anymore.  I read the comments to Kari and she was shocked that anybody would be so arrogant to shamelessly write those comments.  Please use the comment section under this blog to identify yourself so that I may speak with you directly.

Aaron and Kari

Saturday, December 10, 2005

A little more info

This is just an add-on to the last post which I did last night.

I’m sorry I didn’t include much about Kari’s progress in the last update.  For the most part, she’s doing about the same.  She still has significant pain, but it is manageable with her pain meds.  She will get her casts off on Monday, have them off for a week, and then have one more final set.  The atmosphere of this hospital is really wearing on her.  So much of the staff is hard to work with.  Kari is tired of being treated like an uneducated child, and is very sensitive when the nursing staff is demeaning.  I read her the last update that I wrote and she told me that she agreed with every word of it.  At the mall yesterday, it was very hard for Kari to be stared at all day and to always feel in the way.  She did a great job driving her new chair though, and got her ears re-pierced, but each of us were sad about how things are going.  I can’t ever remember being with Kari and having both of us feel as sad as we did sitting around here last night.  This morning her nurse came in to turn her and didn’t listen to how Kari wanted to be positioned.  She also reminded us that the cafeteria closes for breakfast at 9:00 three times, even though Kari told her that she didn’t want anything.  Of course, she did a bad job with Kari’s positioning and I had to fix it.  The way she left her was painful to Kari, and her sheets were wrinkled up underneath her, which is bad for her skin.  It seems like every time someone comes in they assume that we don’t know how to do anything and that we can’t read a clock.  I can never trust that someone will do a good job.  When her nurse left, I asked Kari what was wrong, and she just said “I hate it here.”  We are trying to focus on going home so hard.  I know that it is only a bit longer, but when every day you people are treating you with a demeaning attitude and you have to be on guard constantly against inferior care,  2 ½ weeks seems like a long time.  


Friday, December 09, 2005

Let's get out of Dodge

Hello All—

Not much new news to report except that I think we are getting more and more firm on our Dec. 28th leaving date.  Also, Kari manual wheelchair, which we need if her power one breaks and when we need to get into tighter spaces, has been denied by our insurance.  It is being resubmitted, but if it is not approved we will have to pay $3500 for it.  Because of the generosity of everybody who has sent donations, we have the means to buy it, but every dollar is important as there are so many costs still to come from home health care to prescriptions, to medical supplies.  

We went to Colorado Mills today, which was a good outing, but right now I cannot get over the incidences that took place here at the hospital the last two days.  Yesterday morning, without anybody telling me first, five administrators from the hospital pulled me out of the room to talk to me about the roll-away bed that a nurse had brought in for me so that I could sleep next to Kari.  Even though it was obvious to any logical human being that there was not a problem having the bed there, they told me that they had to remove the bed because it was a safety hazard.  Their official policy states that the area where Kari sleeps can only have one bed, so obviously they were allowed to remove it if they wanted to.  My primary disagreement with them is that the reason for the rule was not applicable in this situation.  There was plenty of space to move the bed aside if there was an emergency.  There was more space in the room with the bed there than there was in previous rooms that they had deemed safe enough for Kari.  Still, while I could not make them change their policy for me, the arrogance of the administration, none of whom had ever been in the room, and none of whom knew anything about Kari or her situation, deeply offended me.  If they had simply been honest with me and said that they were removing the bed because that’s their policy and they won’t make any exceptions, that’s fine, but they were trying to tell me that they had Kari’s safety and best interest in mind, and that staff had complained about the bed being there, even though not a word was ever said to me.  Keep in mind, none of the people in the meeting had ever been in the room or knew Kari.  They were so arrogant to even ask me “Don’t you want what’s best for your wife?”  

Today, the nursing supervisor removed a “do not disturb sign” that we had placed on the door.  When I confronted her as to why it was removed, she told me that she would not discuss it with me.  I had to yell to get her to listen so she immediately called security.  Of course it was unnecessary and I got her to sit down and talk with me, but got the same old run around that we always get at this hospital.  Apparently the nurse that took the sign off our door told her that she had spoken to us.  She did not.  When I told the supervisor this, she refused to believe me.  Because I had been so visible angry and raised my voice in the hallway, she told me that I was negatively impacting Kari’s care.  When I told her that people here that we have gotten to know and have actually worked with had a good relationship with us, she told me that it was only because they were too nice to tell me otherwise.  If they were honest, she said, I would find that they did not like me and were intimidated by me.  

The real issue is that Dianne, the supervisor, is intimidated because I can see through the smoke and mirrors.  I do not and will not accept the demeaning, dishonest and arrogant attitude that some of the nursing staff and the administration here display.  Some of the nurses here talk to Kari like she is three years old.  They are dishonest.  They assume that they know best even when they don’t know the patient.  And don’t forget about the incident that happened when I was gone and Kari’s nurse, against policy, denied Kari’s request to go back to bed.  The nurse sat in a meeting with us and Dianne and flat out lied about what had happened.  Dianne backed her up without hesitation.  “Let’s not worry about the details of what actually happened, lets try to move forward,” she said.  Never mind the fact that part of moving on is trying to understand what happened.  This may not seem like a big deal, but the day in and day out grind of being at a hospital for 145 days wears on you.  I think that the supervisors and administration here have forgotten what they do.  They have forgotten the Hell that every patient here and their families have been through.  They would fight for their loved ones too, I hope, but they do not want me to do the same.  

We are at the point now that we have zero faith or confidence in the nursing care at this hospital.  Not because all the nurses here are bad, to be sure, there are some amazing people here.  But what happens when something doesn’t go right?—Who is there for us to turn to?  We are seriously considering not coming back here for Kari’s re-evaluation.  My stomach turns with the thought of ever even having to think about Craig Hospital again.  The part that I am most angry about is that our last month here, our most important month in many ways, has to be so miserable.  There is too much stuff to do without having to deal with this.  I hope that I can let go of the anger that I have towards this place so we can get done everything that we need to get done so we can go home.  The last thing I want to do is to offend or have ill feelings towards the many people here that we like:  Dr. Balazy, Dr. Sam, Avery, Lisa, Debie and Debbie, Brea, Jamie, Laura, Laura, Heather, Heather, Heather, Amanda, Dianne and Dianne.  (Lots of repeater names in there, huh?)  I feel bad about hating this place so much when there are so many good people here.  The problem is when the people that are put in a position to deal with the problems don’t do their job.  We don’t expect everything to be perfect, we just expect to be listened to.  

I know that there is a lot of anger behind what I am writing here.  I hope that we can get over that and move on.  I guess I am using this forum to let it out because I feel that there is nobody else that will listen.  The psychologist and our case manager have been great about being our advocates, but there is only so much they can do.  There is a culture of arrogance here.  What I have come to find out is that a lot of the people that work here care about what happens here.  The people that run the place, and yes, I have spoken with the president of the hospital, are much more concerned with the image that Craig Hospital has to the public.  Maybe I was naive to believe that this place would be different.  People have told me what other places are like.  For all its reputation as a great institution, though, the administration’s mantra is “Image is everything, the patient is nothing.”  

Wednesday, December 07, 2005

Update 12/7

Hello All—

Well, it looks like we will not be home for Christmas after all, but after we’ve been here this long, a few days doesn’t make too much of a difference.  The thing holding us here now is our apartment community, which will not be open (it’s brand new) until the 27th, so Kari will not be able to come home until the 28th or 29th.  There is a very slim possibility that we will be able to move in sooner, but it doesn’t look likely.  The apartment manager already talked to the construction people and they told her that they couldn’t do anything earlier than the 27th, but then she told me to check back with her again at the end of the week.  At this point, being here for Christmas isn’t nearly as upsetting as just being here even another minute longer than we have to.  Both Kari and I are sick of being at this hospital, and despite all its acclaim as a great facility there are many annoying, frustrating, and counter-productive things that happen every day.  From scheduling things like x-rays or tests during our therapy times to just dealing with some of the staff, it often seems pointless to be here any longer.  I like our PT and OT, the doctors, and most of the rest of the staff, but it’s amazing how a few stupid people or just a lack of simple communication between doctors, nurses and therapists can really downgrade the environment.   I even feel bad feeling bad about this place because there are a handful of people here we really love and will miss, and I wish we could be happier about being here for their sake.  As Kari explained to me though, when I was upset with the east-side nursing coordinator this morning (and apparently she’s not too popular with some of the staff), we just have to keep our cool for a few more weeks and let the stupid things go.  Also, Lisa, the psychologist, and Avery, our case manager are always there to help smooth out the problems we have with staff—its nice when people have your back.  

Okay enough being a metal grate for air to pass through and on to some real news.  Even though we weren’t able to get in early, the apt. manager at Stone Canyon has been great.  Everybody that I’ve dealt with there so far has been super nice and she has also been helpful to me in planning the bathroom modifications we’ll have to make.  From what I’ve heard, a lot of places try to tell you that you can’t do anything and then you have to fight them on it, but they’ve been helpful on getting measurements and things like that.  

As for the past week, on Friday Kari and I went on another outing, our first in 2 ½ months, to a mall.  Part of the reason for the outing was to use public transportation and we took the public bus which was pretty easy.  There weren’t any other passengers except for Craig people because the bus company uses this to train new drivers on how to handle the chair lift and tie-downs.  Kari did a great job driving and the only time I had to push her was when we were in the dishes and china section at Dillard’s.  This Friday we’re going to Colorado Mills for the whole day which should be cool—probably do some shopping and see a movie.  On Monday, Kari got off her last set of straightening casts off her arms and her first set of pronating casts that will help turn her hands palm-side down.  Along with her arms being locked at a 90 degree angle, her forearms were also locked so her palms were always facing up, which makes it hard to use her arms at all.  She’ll probably have one more set after these put on on Monday.

The most exciting news this week though, is that Kari’s wheelchair came in yesterday.  It is shorter than the hospital one she is in now and fits her way better.  It’s also a nice shade of blue.  In the new chair, Kari will have more room in the van and also be able to fit her legs under tables.  It is also a better model and it has technology to keep the chair going straight on uneven surfaces, like when you go over a curb cut or driveway on the sidewalk.  With the sip and puff controls you have to make continuous adjustments to keep the chair from veering down the slope if you don’t have that technology.  Today we also took a look at some voice recognition software for computer that looked really neat.  Anyways, I have a whole lot of pictures that I can see if John will post on the website because I haven’t posted new pics in a while.  I’ll also include a few of our new place in Riverside too.  22 more days to go!