Durango & Silverton Narrow Gauge Railroad

Last Thursday the family loaded ourselves into the car and drove to Durango Colorado for an extended weekend vacation. The drive up was really neat as we were able to see some parts of the country that none of us had seen before.

We stopped in at the four conners monument thingy, which I thought I had been to before (but I was wrong) and snapped a couple of pictures.

On Friday we took the Durango and Silverton train ride. During the summer this train goes from Durango up to Silverton (hence the name). During the Winter (which it still is in the mountains of Colorado) the train only goes about half-way to a place called Cascade Canyon. At that point the train stops and everyone can get off for a short lunch break.

On Saturday we decided to drive up the highway to Silverton. We had heard from some people on the train that there was still a lot of snow on the ground. The drive was very cool (and sometimes very cold) and the scenery was amazing. Silverton did not disappoint.

Silverton is hidden away is a small valley and when you first see it it does not look real. We spent a couple of hours exploring the town, which was mostly closed. Silverton has only one paved road (that we could find).

Sorry for the short write-up. It was a fun trip and higghly recommended.

Headstone is in

Well, it took as long as they said it would but Emily's headstone was delivered and installed this week. I really thought it would have happened much sooner but they said that the photo would add some time. I am glad that they took their time and got it right. It turned out...well...nice.

I am not sure I know what I feel about this. In a way it is good to know that this last item is done, but on the other hand it does not make me (or Kathy, or the girls) feel any better.

On a slightly different note, Emily's work (and Kathy's) build a memorial gardern to commemorate employees that has passed away.

It turns out that 2007 was a really bad year for Healthsouth.

I just wanted to say thank you again to everyone who has left comments and offered condolences. I am sorry that I do not answer them all, it is still tough to talk about all this and writing is not much easier. We are all doing well.

The Last Holiday Party at UCLA

We went to the UCLA Pediatric Transplant Holiday Party this weekend. We have gone the last two years and it has been a really great time. Going back to Westwood and UCLA has become one of the rare times of relief for the whole family. It was really strange to be going this year but it was something that we need to do. It was to be our last chance to see so many people that have played such a huge part of Emily's life and our entire family.

We drove over to LA on Friday morning and got to the Tiverton House by about 1pm local time. Our first stop was for lunch at Mr. Noodle on Broxton in Westwood. This was been our favorite place to each in Westwood for more than 2 years. It was also one of Emily's favorite places. Lunch was great, as usual, but it was strange to be there without her. It was so strange that we only ate there once over the weekend, which is strange as we generally eat there two or even three time in a two day trip.

The party was held on Saturday and this year it was in a new location. Previous years the party was held in the ballroom at the UCLA Student Union. This year the party was at the Lionsgate Commissary in Santa Monica. Yes, this the entertainment distribution company. The location was very nice and they had a movie theme for the party. It was all very nicely done. We got to see a lot of the doctors and staff from UCLA and several of the transplant families that we met during Emily's stay at UCLA. These are some really great people and it was good to see them again, but it was very emotional for all of us. Some of the people that we saw had not heard the news and that was hard. I will miss these folks but I am fairly sure that we will not see most, if not all, of these people again.

All-in-all it was a really good weekend. It was emotionally draining but we needed to be there. I think that this will help with some closure on that part of our lives...

Headstone

Today was another tough day. We went to the cemetery an ordered Emil's headstone. It was another surreal task...and it was very draining. It only took an hour but I felt like I had run a marathon. It wasn't as tough as I thought it was going to be...

It will take several weeks to be delivered.

Emily's Birthday

Today is (or should have been) Emily's 18th birthday. We should have been going to the movies for her free movie on her birthday. We should have gone to her favorite restaurant - Lai Lai Mongolian BBQ - for lunch. We should of had a bunch of people over this evening for cake and presents. But that is not what happened and it felt all wrong.

Instead we went to the cemetery and put up a temporary maker that Emily's Uncle Red made. Without a marker the grave seems so lonely. We also placed some flowers. It was a tough day to say the least, but we knew it would be.

Things at the Brightwell house have been OK, I guess. Kathy and I went back to work on November 8th, she was only able to work a few days before it became too much to deal with. I struggled on until the end of the month but now I have to take some time. I had hoped that getting to work would help me cope but it didn't and now I am paying the price. Time to get this sorted...

Sharleen and Delaney are doing well. Sharleen still has some bad days but she seems to be getting through this. Delaney, as expected, has been doing fine. She has had a couple nights with bad dreams but nothing too bad. They are going to be fine. Kids are resilient.

The standard question that I am asked is "How are you doing?" The standard answer I give is "As well as can be expected." I don't know any other way to express how I am feeling. Everything seems wrong to me and I guess that is normal...

Thank You

I just wanted to thank all the family, friends, acquaintances and complete strangers that have offered condolences and support during this tough time. We have been very blessed by all the help that has been provided. I would like to thank everyone personally but I am not sure I can remember everything that has been done for us over the last several days. If I don't thank you in person please realize that my mind has not been functioning for some time.

A Couple of Articles About Emily

http://westvalleyview.com/main.asp?Search=1&ArticleID=28657&SectionID=2&SubSectionID=&S=1

http://westvalleyview.com/main.asp?Search=1&ArticleID=28580&SectionID=2&SubSectionID=1&S=1

A Celebration of Emily's Life

We will be holding a celebration of Emily's life Saturday morning on November, 3rd at 9am. The location for the event is:

Crystal Rose Funeral Home
9155 W. Van Buren St.
Tolleson, AZ 85353

Following this event Emily will be laid to rest at the Holy Cross Cemetery at 99th Ave and Thomas Rd.

Afterwards we will be meeting at Emily's house, please bring a chair just in case if you wish to sit.

1406 S. 119th Dr.
Avondale, AZ 85323

Please come and help us say goodbye to a wonderful daughter, grand-daughter, niece, sister, cousin, and friend.

The Worst Day...Ever

Monday was a bad day. Emily continued to have bleeding problems from the ECMO and her lungs were still not able to their job. It was clear by early morning that she was not going to last much longer on the ECMO and something would need to be done. We had a very long talk with the doctors about all the options and the potential complications with each. They also gave us the option of lettering her go. It was the worst decision I have ever had to make. We decided that we could not quit on her - she hadn't quit on us - so were going to try anything that would give her a chance.

At about 11:30am they took her to surgery and removed the ECMO and put in another type of cardio pump. This pump does not supply oxygen so her lungs, that were already stressed, would have to do the job. By about 8pm it was clear that this last hope was not working. Her lungs couldn't cope with the stress. In addition she was having a lot of bleeding that they could not control.

Emily passed away at about 9:30pm last night. She put up a huge fight and the medical team did everything in their power but she was just too sick.

Her mom and I are making funeral arrangements and I will post them here as soon as we have them worked out.

Grey Sunday

Sunday was a really tough day for everyone, but particularly Emily. This started OK but soon began to go down hill. Early in the morning they turned off the heavy sedation that she has been on. This allowed her to be more responsive and move a little. She still was not awake but she was aware of certain things going on around her.

By mid morning she began to bleed heavily from the ECMO line in her leg. This very quickly became a critical situation and she did code for several minutes. They were able to get her line reconnected and the blood-flow restored long enough to get her to surgery. The surgery was successful enough to get her back to the critical care unit and allow the blood loss to be manageable.

Family and friends from all over rushed down to be at the hospital. I have to believe that all of this support and all of every one's prayers made a difference in getting Emily through this time. I know that Kathy and I would not have made it without all this support.

The evening and through the night were stable...sort of. Her heart is doing some work and she is still responsive to commands. She even opened her eyes on command for us. Emily is still fighting hard but time is no longer on her side.

More later....

One Step Back...

...and two steps forward. That seems to be the way to sum up Saturday. The day started rough for Emily with the discovery that fluid was building up in her lungs. A lot of fluid. So much that they switch the oxygen supply to the ECMO machine. To add to this problem her heart was still not doing much at all, which is why the fluid was building up. Kathy and my brother, Kent, were the only ones at the hospital this morning and Kathy had to talk to the doctors by herself. This did not go very well.

Kathy's plan was to be home by 10am to spend time with the girls and get ready for the birthday party. She could not get home until about 1pm, and she was not in a good state of mind. Things at this time were looking very bleak. I came back to the hospital so as to deal with anything that needed to be taken care of and to monitor Emily's condition. My mood was black on the way to the hospital.

I arrived at about 2pm and went straight back to see Emily. She was about the same and they reported that they had been making progress on the fluid in the lungs. Her arterial pulse line (which has been nearly flat since she arrived here) had a very small wave to it, but nothing to be excited about. A couple of hours later I went back to visit her and the arterial line on the monitor was about twice the size from 2 hours earlier. They also reported more progress on the fluid control. By 6pm the arterial line was really starting to look like something. It was not a pulse but her heart was definitely getting more active.

When I went in to see her at 8pm I was stunned, she had what looked to me like a pulse. It was not real strong and it was a little sloppy but it was a pulse. Her blood pressure was also showing signs that her heart was starting to do some work. All through the day Emily was been taking breaths on her own, which is another huge positive. We have not had any official word on what all this means but it looks like the day is ending much better than it started.

More later...

A Slightly Better Day

Friday started off quiet and stayed that way all day. Emily is still on the ECMO system and is still heavily sedated. There are some very encouraging news. Her kidneys are working good and so is her liver. All of her Oxygen is through her lungs, so they are working. There has been some very slight response to the nurses when they have been talking to her, mostly eye movements. They have also reported some are movement while they have repositioned her. This is all very good news. She will, hopefully, have the neurological evaluation today. They need to make sure her brain is functioning properly after her crash. That may be the hardest sentence I have ever written...

Today is Sharleen's tenth birthday and we have a party at our house for her. Everyone will be there except dad. I will be at the hospital in case they need one of us.

More later...

A Really Bad Day

Yesterday was a really bad day, perhaps the worst day yet in Emily's battle. She was settling in at PCH for a night of heart monitoring. Her hart had been doing some strange things but the cardiologists were unable to detect what was happening. They decided they needed 24 hours of heart data to see what was happening. After being in the hospital for only a couple of hours word came from UCLA concerning her last heart biopsy (on Oct 5). They confirmed that she was in rejection and needed immediate treatment.

She began a series of medications that was intended to kill off her T-cells so that she could have a plasmapheresis procedure to change out her blood plasma. This sounds as tough as it is. After about an hour and a half on the medication she began to vomit and was feeling very bad. At about 2am Thursday, after her mom helped her to the bathroom, she collapsed.

This began about 45 min of CPR and other activities to get her heart started and to get her to breath on her own. I received a frantic call at about 2:15am telling me to get to the hospital. Kathy was all alone and watching a horrific scene. I called my mom to come over to stay with the girls. i got to the hospital just before 3am and they were still working hard to save her life. It was worse than any nightmare I have ever had.

It took a long time to get her inti bated and get her heart beating on it own. It also took huge amounts of very powerful medication and her heart was not working very good (in fact it was barely working at all). It was soon evident that in her condition they were going to need to get her on some type of support to give her heart a break. They first tried to insert an arterial pump but this really did nothing to help her. By 9am or so they were hard a work trying to get her on the ECMO system. It took several hours of work to get her stable on the system.

The staff at PCH worked very closely with Emily's transplant team at UCLA and the heart transplant team from the Mayo Clinic in Scottsdale. It was decided that Emily had the best chance at survival by being transfered to Mayo and placed in the care of their team. These people have the expert knowledge of rejection that Emily needs.

She was transported to the Mayo Clinic by 1:30pm and the team went to work. They quickly got her stabilized in her room and began preparation for a biopsy and to put a catheter in her heart to releave pressure from the ECMO machine. This will prevent fluid (blood) from being forced back into her lungs. These procedures were completed, and went smoothly, by about 7pm. It was then back to the room to begin a run of the plasmapheresis.

By the time I headed back home at about 10:30pm things had quieted down. Kathy stayed at the hospital but nothing new happened (for a change).

More later...

More Rejection

Things for Emily have hit some tough times. She spent last weekend in the hospital to treat a rejection episode. They sent her home Sunday night with plans to monitor her progress with frequent doctor visits and lab work. So far, this week has not been good (it hasn't been a tragedy either) and she has been in to the doctor almost every day. Each day things are different from the day before - sometimes better but mostly not better. To top it all off she has caught the flu and pink eye issue that have been going through our house for the last week.

It looks like the rejection issue is still happening and combined with the other thing she is headed back to the hospital. It is time to really get a handle on this. I am hoping that she can get a room at Phoenix Children's Hospital as all her doctors are there and the staff is well known. i will feel much better once she is in the hospital and they can begin to get this under control. The stress on all of us is unbearable.

Today is Kathy's Birthday...and it looks like we will spend it at the hospital again.

Nobel Prize for Al Gore

I have seen and read a lot in the last few days about Al Gore's winning of the Nobel Prize, but this is the most original take so far.

http://www.tehrantimes.com/index_View.asp?code=154819

The funny thing about this is that I agree that selecting Gore was for very political reasons; I just never saw it in such a Marxist light. It is kind of telling that the most communist interpretation of the prize would come from Tehran. All it is missing is some Jewish conspiracy.

Proof! Global Warming is Caused by Human Activity

This article proves that Global Warming is the product of human activity! http://www.wecnmagazine.com/2007issues/oct/oct07.html#1 It also demonstrates not only the cause of the problem but the solution as well. I feel so much better now.

Brazil Comes Alive

This is just a strange story. It really reminds me of the sub-plot to the movie Brazil. I have visions of a time when commando plumbers are at work in the city of Paris secretly fixing bad pipes.

Something Political

I know I haven't been doing much political blogging but I just had to put a link to this up - http://www.townhall.com/blog/g/e50c7412-502a-4a75-9b75-b0c26b059404.

It is almost like looking at some one's soul...

2 Years

Today is the second anniversary of Emily's heart transplant. It is hard to believe that it has been two years already. Emily has been doing great for the last couple of months. I still have trouble going back and reading the stuff from two years ago, that is when I remember that this is all real.

The quilt that was started last year in honor of the first anniversary of Emily's surgery was recently completed and it looks amazing. I will have a detailed post about it soon. As soon as I get some good pictures.

Strange Music

I have been listening to a lot of strange music lately. Mostly stuff by Buckethead, Les Claypool and his various projects, Mr. Bungle, Steve Via and other stuff. As I list to this stuff I find myself wondering what a side project with Mike Patton, Les Calypool and Steve Via would sound like. I already came up with a name - PVC - and the first album could be called Pipes. That would be cool. Anyway, strange music can inspire you to try new things - no, I am not talking about drugs. It makes me want to go to D's Diner...

A Big Week For Emily

Yes, I know. I failed to write on Friday again! I'm working on it, I really am.

Emily had a big week...actually a huge week. She graduated from high school on Wednesday. She got a new job as a receptionist for the same place where her mom works. And today she had her first class at college. She handled almost all of the inevitable bureaucracy herself. It is the start of a phase in her life.

Iowa Straw Poll

Ok, I know I said that I would write something every Friday but I am still having some trouble getting motivated.

On the Iowa Straw Poll that was held today, Romney won. This was not really a surprise I guess, but second and third place were - Huckabee second and Brownback third. I like Romney but I don't know anything about these other two.

It is interesting that Ron Paul finished higher than any of the "front runners" (other than Romney of course). Now, I understand that McCain, Giuliani and Fred 'not a candidate' Thompson all skipped the event but I really expected that they would have a better showing. Perhaps the media is wrong about the real contenders for the Republican nomination? Nah, this is just an insignificant straw poll...right?

New Layout

I have update my blog to the new blogger tools. As you can see I have a new template. I will be adding in the links and other side-bar items over the next couple of days.

Pathetic

...just pathetic. I have lass than a dozen posts on this blog this year. That is just sad. It is was just a couple of years ago that I was posting several times a week. I have tried a couple of times over the last year to get motivated to start writing again but it really has not worked. What I plan on doing now to get back into the writing habit is to just do it...as it were. I am going to try and write every Friday no matter what.

Hopefully this is just the start.

18 Years

Kathy and I celebrated our 18th wedding anniversary last weekend by spending a couple of days in the Sedona-Cottonwood-Clarksdale area of Norther Arizona. The Plan was to spend two nights in Sedona and take the Verde Canyon Railroad trip through the Verde River Canyon.

In 18 years of marriage Kathy and I had never taken a trip without the kids. We did not even have a proper honeymoon, so we were really excited about the trip. We left kind of early Friday morning and took the long way to Sedona. We went through Prescott and had lunch in Jerome. I haven't been to Jerome since I was a kid and it is even weirder than I remember. After lunch we got caught in a huge downpour as we drove down the mountain to Clarksdale. The rain was nice.

We scouted out the train station and looked around town. Clarksdale is a sleepy little town but there are signs of new growth which kind of surprised me. Next it was on to Cottonwood, which is only two miles down the road from Clarksdale. It is another sleepy little town but it feels real. Finally we made it to Sedona, which is not a sleepy little town and certainly does not feel real.


Saturday we were out early and off exploring again. We did not have to be to the railroad depot until about 1pm so we had time to kill. We explored the Tuzigoot National monument which was very interesting. We then headed over to Cottonwood and did some shopping in old town. We found a huge antiques shop, and I do mean huge. We checked out some of the local craft shops and dropped a little cash. Lunch was at the Tavern Grill in Cottonwood. This was amazing! The best food on the trip and a really cool place.

The train ride was, of course, the highlight of the day and the trip. We had first class tickets which included a complementary margarita and appetizers. There was not much in the way of crowds so we had plenty of room. The train is cool because, not only does it have air conditioned coaches, there are also open-air gondolas that you can go to. These really allow an amazing view of the scenery. The entire trip is about 4 hours but really doesn't seem like that long.


It was an excellent trip and I highly recomend the Verde Canyon railroad trip. It is time to wrap this post up! It has taken me nearly a week to write it, I getting so lame these days.

Pete Townshend

Pete Townshend has started a new blog. Kinda interesting.

Family Update

It is time again for an update of the happenings with the Brightwell family. This could be a short post. Emily has been doing great for the last several months - no news is good news for her. Sharleen and Delaney are also doing very well. Sharleen had straight A's for the first half of the year and they are both loving school. The whole family has been battling this annoying cough\cold\flu thing and I thing we are just passing it back and forth.

We have decided that it is pretty ridiculous to live in Avondale and for me to work in South Chandler. I am driving 40 miles one way which equates to about 2 1/2 hours of drive time per day! This is costing me about $200 per month just for fuel. Something has got to change and it will not be the job. This means that we will be moving to the East side sometime this Spring. We are starting the planning for selling our house in Avondale and finding a place in either Tempe, Mesa or Chandler. It seems like this will not be too big of a task (relative to how tough moves can be). Our current house is is great shape and is in a nice location so we should have no trouble selling it. Just a few minor projects to complete before it will be ready to go on the market.

Finding a place on the other side of town looks like it will also not be an issue. We have the Mortgage info together and know what we can afford, and there are many houses to choose from. I will keep you updated on this endeavor.

New blog

After much internal debate, I have started to open a new blog just for my hobby stuff. This blog has too much history to dilute it with the trivial! Check it out if you are interested.

Drunken Samurai Painting Blog

I am thinking about starting another for my political ramblings...

Miniatures Post

Here is a picture of my latest painting project. This is a Foundry Orc Assassin or something. I just think this is a cool figure. I'll finish the base soon...

I am thinking about starting a new blog just for my miniatures projects. It would be an easy way to revamp my tired old site.

New Family Project

I recently aquired what will become a new family project. Take a look!

It is a 1966 Chevy C-10 long bed truck. I actually bought it a few months ago and I am just getting around to blogging about it.

The truck is pretty much all orginal and is not missing any major parts. It runs and drives great! It has a 283 cid V8 and no power brakes or power steering. It does have factory A/C that still blows cold.

The truck was originally a metalic gold color and some of it is still visible on the firewall. The guy I purchased the truck from did a complete tune-up and recovered the seat and carpeted the floor.

There is a little body damage and the bed is in bad shape. The good thing about this year is that every part is available - everything!


Kathy and Emily are having a blast driving it and they get more miles on it than I do. This should be a very fun project. I will post more pictures as we get work done.

What Happened to all the Politics?

You might be wondering what has happened to the political commentary that used to make up the backbone of this Blog. Do I no longer care about politics? Have I become a citizen of another country? Have I switched parties? No, no, nothing like that. I still care a great deal about politics but with all of the drama in my life for the past year none of it seemed important enough to write about.

I have been following the current election very closely and I plan on voting. I will vote correctly for all issues, candidates and initiatives. You might be wondering what my take is on this current election, and then again maybe you don't care. Either way here is what I have been thinking.

Let me state that I think the Democrats will win back the Congress and here is why this is a good thing. First, I think that Harry Reid and Nancy Pelosi will make wonderful leaders and they will finally be able to solve some really pesky problems that we have been facing, here are a few examples:

1. They will finally be able to impeach the president! This is a long time coming. I know that the proceedings will be very long and drawn out but they will really help the ratings of CBS news. In fact, they will finally have a use for those documents they found.

2. We will get many more congressional investigations on just about any topic you please. It will be great! There is tons of things to investigate about the Iraq war, terrorism and the economy. We will finally figure out how the president is able to manipulate the price of gas for his political gain. We will finally get all those secret documents about Dick Cheney's meeting with "Big Oil."

3. The Iraq war will be over! If they hurry we can get our troops out before Saddam is murdered by our puppet Iraqi government and he can be put back into power. Once he is back then everything in the Middle East will be right as rain.

4. Osama Bin Laden will be released from the secret CIA prison that he has been in for years. We will offer to pay damages for holding him without due process. He will be grateful to the new Democratic leadership and end all anti-American activities.

5. Global Warming will (slowly) be solved. To be sure, there will be many congressional hearing on the issue (see #2 above). Al Gore's movie will be required viewing for all of Congress and, who knows, Al might get to do a live presentation. This will, of course, lead to important new environmental laws that will solve this looming crisis. This will be very expensive, but all the new tax revenue coming in from repealing all those tax cuts, we will be able afford it.

6. Our dependence on foreign oil will continue. Sure, we will spend a lot on alternative sources of energy, but this will take time. It will be wonderful to know that the frozen wastes of Alaska will be safe from the Cheneyites who would destroy it for our energy independence. The real solution to this issue is to use less not develop more.

7. North Korea and Iran will become our friends (again). Everyone knows that our problems with these two nations is of our own (president Bush's) making. Once the president is a true lame duck these friendly nations will be willing to talk with us about the "bomb" thing.

8. It will be OK to hate the Jews again. Israel will be mercilessly pressed into some huge concessions that only they will have to abide by. If we keep this up we can negotiate them out of existence.

9. We will stop calling terrorists "terrorists" and recognize that they are merely another facet of a diverse world. It is important that we celebrate diversity and understand different cultures. We should not try to change people. If it is normal for people to show their displeasure with the current socio-economic conditions in which they live by blowing up innocent people we should not pass judgment but instead we should feel grateful we live in such interesting times.

10. The most important reason why having the Democrats win in 2006 is that it gives us 2 years to get it out of our system before we do something really stupid like elect Al Gore or Hillary president.

Pacemaker

Emily had her pacemaker removed yesterday morning. Everything went well with the surgery and she was doing well enough to go home yesterday afternoon. They has originally planned on her staying in the hospital over night. She will be very sore for many days and will not be completely healed for 6-8 weeks.

Vacation

Wow! It has been nearly three months without an update! Time flys. I will try to be better about posting and with all the stuff in the news lately i might even get back to opining.

On Monday we got back from 5 nights in L.A. We went back for the UCLA transplant picnic. We had a long list of things we wanted to do as well so a few extra days were required. We stayed at the Tiverton House right next to the medical center. This will probably be our home away from home from now on. We got in early on Thursday morning, the same day that the Drapers were going home. That morning the hotel was abuzz with activity for their departure.

Just a quick run-down of our activities. We went shopping at Ameoba. We ate at a lot of good resteraunts. We went to the Queen Mary and the Scorpion submarine. We saw a movie (Nacho Libre). We ate at some more good resteraunts. We went to the transplant picnic. We went to the beach a couple of times. We went to the Venice Beach boardwalk and saw the freaks.

There were only a couple of things we wanted to do but were unable to. We wanted to go to the Acker Mansion and see the collection of Sci-Fi and Horror movie stuff - no dice. We also wanted to go the the Santa Monica Peir Aquarium - no time.

Emily picked up a little ear infection and so she got to go to her favorite hospital for treatment but that also meant that she was not able to do much at the beach.

It was a great trip and I can't wait to go back - maybe we can squeeze in some of the things we missed. When we got home the cats had gone crap crazy and the house was a mess. While cleaning up that we realized that at some point during our trip the frig had stopped working and then started working (sort of) again. So, we have to buy a new refrigerator the next day! Good thing we just refi'ed the house.

I will try to add some pictures soon.

Prom Night 2006

Wow! It has been nearly two months without an update. Time flys. Well, Emily's big day is finally here. Tonight is Prom night. I don't have much to say so I will let the pictures do most of the talking.

First stop today was to have her nails done.

After the nails it was time for Great Aunt Becky to get the hair and make-up just right.

She does nice work.

Next it was time to get dressed. Who knows how long this has taken? Two or three hours atleast!

Her date finally arrives!

No, I was not cleaning my guns when he arrived. That would be very rude and everyone knows I am a gentleman.

Off to the party!

I hope they have a great time!

It is nice to know that I will only have to go through this a max of 8 more times!

Books, Music, Movies

It has been a LONG time since I have talked about anything other than Emily. The easiest way to get started on something new is to just do it! So I will start by talking about what I have been reading, listening to and watching for the last few months.

BOOKS

I have read a couple of books over the last few months.

An Army at Dawn The War in Noth Africa, 1942-1943 by Rick Atkinson. This is about the U.S. Army in operations in North Africa - Tunisia, Algeria and Morocco. The style is historical narative and is is a very interesting and compelling read. He makes a very good case that the North Afican campaign was critical for the U.S. Army's success throughout the war. Without this valuable experience any attempted invasion of Eurpoe would certainly have failed. A good book covering a forgotten chapter of U.S. military history.

Rommel as Military Commander by Ronald Lewin. This is an older work on Rommel but it was written by someone who fought in North Africa against the Germans. It was originally published in 1968 and makes no reference as to the importance on the ULTRA intelligence on Allied operations. It could be that the book was written before this information was made public. The effect is that the Allied generals who faced Rommel seem much more able than they actually were. It is clear that if Rommel had had the intel that the Allies had he would have succeeded in conquering North Africa and the Middle East.

I am currently reading The World is Flat by Thomas L. Friedman. More on this book later.

MUSIC

Mule Variations by Tom Waits. All I can say is Wow! I had heard of Tom Waits and probably even heard some of his work but I never had a chance to listen to him. This album is amazing! I am not even going to try to review this because I can't think of anything intellegent to say. Good stuff!

World of Glass by Tristania. OK, I am pretty igonorant when it comes to this band. I know they are from Europe and probably Scandinavia but I am not too sure. This is a great metal album and yet so much more. The style is very gothic with oparetic vocal parts mixed in with death vocals. Very powerful guitars are a driving force throughout the entire disk. I really like this!

Lightning to the Nations by Diamondhead. I had heard of this band long ago, I think a freind had a compilation of metal bands. When I first heard Metallica in the mid-eighties I had no idea home much of an influence Diamondhead was. I finally got a copy of this disk and I was surprised to discover that Metallica have already rerecorded almost the entire album!. Think they are short only three songs. The guitar tones are definately the inspiration for Metallica's early sound. All in all a very cool CD.

MOVIES

I have seen a few movies over the last few months and I cannot remember most of them. I remember seeing the new King Kong, mostly because we saw it in the theater. That is not true, I remember it becasue it was very good! A lot of people told us that it was too long and slow but I thought Peter Jackson did a great job. The entire move has an authentic 1930's vibe.

Antoher movie I really liked was The Hitchhicker's Guide to the Galaxy. I am a big fan of the Douglas Admas books but I am no fanboy. I thought this move was really well done. Very funny and captured the spirit of the book.

A movie I was really looking forward to seeing was Serenity. Everyone I know who saw this movie just raved about it, so naturally I couldn't wait. When I finally saw it I was...er....disappointed. Don't get me wrong, it was a good movie but I just don't think it lived up to all the hype. It is certainly better than the Battlestar Galactica remake!

Another Hospital Visit

Emily was back in the hospital Monday afternoon. She has continued with the problems from last week and now they are sure that this has been going on much longer. Possible that she is suffering from the same problem that put her in the hospital in December. The good news is that they have finally diagnosed the issue as the CMV virus. This is a nasty little virus that transplant patients seems to be very suseptible to.

She has started the treatment and was able to go home today. The tricky part is that she will need I.V. meds twice a day for 2 weeks at least. If everything goes OK with the I.V. meds then in a couple weeks she can switch to the oral medication. We have a home health care professional coming over this evening to drop-off the meds and give use instructions on how to administer. Emily has a PIC line in again so this will not be to hard to do.

More later...I'm sure

The State of Things

Emily got home from the hospital on Sunday afternoon. They think that whatever was happening was related to her medications. They made some adjustments and sent her home. She goes to the doctor tomorrow for more tests and an echo. She is feeling better but she is not 100%.

All of this has been really hard on her. Since she has been home from LA she has had alot of time to think. She has come to realize how bad things really were and I think the post traumatic stress disorders is setting in. In some ways she is more affraid today than she was in the hospital waiting for a transplant. It may be time for her to see a different kind of doctor.

More later...

Long Time Without an Update

I am sorry that it has been so long without an update but life has been busy for us all. A couple of weeks after Emily got out the hospital we went to UCLA for the Pediatric Transplant Holiday Party. It was a really good time and it is hard to believe how many transplant patients the people at UCLA have helped.

Christmas was really nice this year, much better than we were expecting. Kathy and I got what we wanted(see picture) and the girls got a alot of presents!

All in all things have been going very well. Kathy and I have been working alot and family life is keeping us very busy. Emily has been feeling good for the last several weeks (though as I write this she is heading back to PCH for some tests - been feeling a little yucky the last couple of days).

I will try to to write more often and I may begin to branch out in my subject matter. There is so much going on and I am finally able to think about things other than family issues. Feels good to be able to think about the trivial again!

Home Again...Again

Emily got to go home on Friday. They seem to be sure that rejection was the root of her problem. A little adjustment to her medication seems to have the situation under control. She felt good most of the time she was there and this made it really hard for her. No one wants to be in the hospital, especially when they feel good. We understand that this is very common in the first six months after a transplant and chances are she will be back in the hospital a few more times. I just hope she has a few months inbetween visits.

On Sunday the family, minus me, went to the annual Make a Wish Holday Party at Tempe Town Lake. They all had a good time and Emily met a bunck of people. This is a great organization, help them if you can.

A week ago Saturday, my friends in my game group held the last of their fund raiser events. This time it was Warhammer Fantesy Battles and it was a smashing success! The event was held at Imperial Outpost games and prizes were donated by Games Workshop. Thank you all!

More when there is news...which I hope is a long time.

Rejection

Emily is still in the hospital but is doing well. She has been undergoing treatment for a mild rejection episode. It does not seem to be anything major but the medication is mostly I.V. so she has to stay in the hospital. The blood tests have been improving over the last 24 hours and if things keep going in this direction than she might be able to come home tomorrow.

Nothing to worry about really, but it is frustrating for everyone. Emily is really tired of being in the hospital, as you can imagine. She realizes that this is part of life now but she would really like to get in a few months between visits!

More later...

16

Emily celebrated her 16th birthday on Friday. We had a bunch of friends and family over and everyone had a great time. Many of the guests had not seen her since she got home.

On Saturday morning she was not feeling well. She threw-up a couple times and was generally ill. About mid-day, after talking to the doctors, it was decided to take her to Phoenix Children's Hospital. After a few tests they decided to keep her over-night. We are sure that she has a stomache bug - the same one her little sister had about mid week.

When I went to see her in the evening she was feeling fine but later in the night she started getting sick again. This mornig her blood test showed some indication of infection. This could be a sign of the bug or it could be an indication of rejection. All of her heart functions have been perfect but they want to be sure, so they will keep her another night and do a biopsy in the morning. This will tell them if the indicators are signalling rejection. I don't think rejection is what is happeneing but better safe than sorry.

If everything checks out she will be home tomorrow. She has been feeling good today and getting plenty of sleep. This is her new reality. She will be visiting the hospital a couple of times a year and will catch everything that goes around. Nothing really can be done to prevent this.

More tomorrow!

Long Time No News

It has been a long time since my last update. Where to start? Emily and Kathy have been home for about a week and a half and are still getting settled in. As you can imagine home feels a little wierd after what they have been through. It is getting better every day!

Emily has her first set of labs, since comming home, tomorrow. On Wednesday she has her first doctors appointment. She will have another biopsy in a couple of weeks. So far everything is going great - we just need to see how this week goes.

A week ago Sunday, my friends at Imperial Outpost games hosted another fund raiser. It went very well and Emily and I were able to stop in and thank everyone in person. Thanks again guys! It is a big help. There are a couple more gaming events coming up.

Emily got a card from her former teacher and it seems that they also had a fundraiser over the halloween holiday. They had a haunted house and raised some donations. Thank you! As soon as I get the flyer scanned I will post it up.

Kathy was back to work last night. Her first night of work in three months. She was really stressed but it seems that all went well.

More news when I have it. No news is good news...right?

Emily is Home!

Kathy and Emily got home at about 4:30am today. My Dad drove over last night, after the doctors OK'ed the return, picked them up and turned around and drove all night. This is all starting to get real. I can't believe that we have gotten through this nightmare!

More later...I just can't believe I have to work today!

Almost Home

Sorry for the lack of post but things have been pretty quiet, thankfully.

The last couple of weeks Kathy and Emily have settled into a routine. They are back in the Ronald McDonald House, in a small room. The TV doesn't work very good and they are too far away from the wireless signals to access the internet from the room. They have been able to get out some and see the area but resourcs are limited for this type of activity. They have been managing but they are getting restless.

On Wednesday, Emily has another biopsy. They have been told that after the results are back the doctor will release Emily to come home! It will take atleast a day to get all the results back but it seems like she might be home by Friday. I just can't wait - it is even worse for them. We are so close now.

It is hard to believe that almost 15 weeks have past since all this began. It seemed like the day of her homecomming would never arrive and now it is just a few days away. Time flys when you are living through a family crisis!

Back from Another Visit

I, along with Grandma, Grandpa, and the girls, took a trip to see Emily and Kathy this past weekend. We had a great visit and Emily has improved dramatically since my last visit almost three weeks ago. The highlight of the trip was our visit to Venice Beach. Emily was able to walk almost all day, with only the occational rest breaks. In fact, she walked all weekend.

Her labs and biopsies have been coming back good. She is feeling good and is getting more and more active. She is really close to getting to coming home. That is a good thing because Kathy and Emily both are going slowly mad. It seems like now it will happen sometime between November 7 and Thanksgiving. Sooner is better.

The fund-raiser WAB tournament, that was held at Imperial Outpost games on Sunday, was a big sucess. Thanks for all of your help guys.

It is late so I will cut this short. One last picture from Venice Beach.

More Fund Raisers

My friends at Leviathan Games (3131 E. Thuderbird Rd Phx AZ 85032 602-996-6646), who I have not seen in months, held a fund-raiser Flames of War tourny a couple of weeks ago. It sounds as if it was a success. Thanks guys!

This Sunday (Oct 30th) the guys from my local gaming group are holding a Warhammer Ancients Battles tournament fund-raiser. It will be held at Imperial Outpost games with prizes donated by the guys at Gripping Beast (my favorite miniatures).

Over the next few weeks there will be more miniature gaming fund-raising events. These include a Warhammer 40,000 tournament and a Warhammer Fantasy tournament. Prizes for these events have been donated by Games Workshop. There will also be a Flames of War tournament. All these events will be happening at Imperial Outpost, contact them for more info.

I have heard rumors that there are other fund-raising envents that have happened or are being planned. Strangely, I don't hear much from people about this. If you are planning something or have already had an event please let me know.

Kathy's Brithday

Happy Birthday!

Today is Kathy's birthday. She is spending it at the UCLA Medical Center with Emily. Today Emily is having her first biopsy since being released from the hospital. This consists of being put to sleep and then a 12" needle (or there abouts) is pushed into the heart from the area of the neck...ouch! I am sure glad they put her to sleep for that. Emily HATES needles - of course no one would like that kind of a needle.

In addition to the biopsy there are a few other test to be done. Most of which I know nothing about. The doctor did say that she would get to see her old heart! But, of course, they did not bring the camera. I really wanted to see it. I bet it is huge!

Not much else going on right now. We should have the test results back in a day or two.

Holding Pattern

Things have been stable for the last week or so. Emily has been going to her lab appointments and the results have all be good. They seem to have her medications dialed in. She will be having her first biopsy - post hospital - soon. I hd thought that this already happened but I was wrong.

Both Kathy and Emily are getting a little stir crazy. We are hoping that they only have a couple of more weeks over there but we just don't know. They both need to come home.

I have been VERY busy at work. I have been working some very long days with lots of OT. On the weekends I am working hard on getting the house clean for Emily's return. It is amazing how dirty the place gets when it is only the cats at home.

The West Valley View ran a follow-up story on Emily last Friday. It was short but good. I was contacted (OK I got a VM) the other day by one of the local TV stations wanting to do a couple of stories about Emily. I decided, after some careful thought, that this just didn't seem like the right thing to do. I am ready for things to return to "normal" and this would just stir things up. Emily was not interested in doing an interview either. Anyway, I never got a chance to say no thanks becasue I never got a responce to my follow-up call.

At the end of the month I will be going back out to LA for another visit. I will be taking Delaney and Sharleen. Grandma and Grandpa will be going too. We will have a little birthday celebration for Kathy and Sharleen. Should be a good time.

We are coming to the end of the major medical coverage for the transplant. That means that the real bills will start rolling in. I got a glimps at the prices for Emily's medications! Let me just say it was breath-taking! She will also have alot of doctor visits and lab work over the coming months. It will be very intersting to see how all this adds up. Perhaps, someday, I will reveal how much a heart transplant with 2 months of ICU costs... I still don't know for sure how much it costs but I have a very frightning image...

Did I mention that I am very thankful for the insurance company? Did I mention that I am very greatful to everyone who has helped? ...and the doctors? ...the nurses? I can't say it enough - thanks to everyone!

Thank You

I just wanted to post a quick "Thank You" to everyone who has posted a comment over the last couple of months. I would love to have been able to reply to them all but things has been a little too crazy for that. I do read all the comments and greatly appreciate all your expressions of support. Thank You!

I also want to thank everyone who has helped by donating money, watching the girls, bringing food or anything else. You will never really know how much help you have given us. I do not know how we would have ever gotten this far without the help of friends, family and total strangers. We still have a long way to go but I know that with continued help and support we will get through this. Thank You!

I would also like to thank all the great organizations that have helped us manage this crisis. Thanks to the Ronald McDonald House. Thanks to the Nick and Kelly Fund. Thanks to the Make-A-Wish Foundation. You have all been great and I cannot wait for things to return to “normal” so I can return the favor. Please contribute to these, and any other, organization. They are all doing great work.

The most important thanks is for all the doctors and nurses at both the Phoenix Children’s Hospital and the UCLA Medical center. You are all amazing people and you saved Emily’s life. Thank you is not enough.

The foundation of the entire effort has been our insurance company - Blue Cross Blue Shield. Without them and our case manager none of this would have happened. Thank You!

I will have more news about Emily, and maybe some pictures, soon. Right now she is resting and doing well. Our hopes of her coming home soon have suffered a reality check. It looks like the first week of November will be the earliest possibility for her to be home.

Emily and Friends

I had a good visit with Emily this weekend. I took a couple of her friends from school and everyone had a good time. She is getting stronger and moving pretty well but is still suffering from some muscle pain. She has about 25 pills a day to take and getting them sorted and the schedule worked out keeps Kathy busy. She has had a couple of sets of labs done since leaving the hospital and all seems to be going as planned. It will take at least another week to get all the dosages for the medications worked out. She has another biopsy tomorrow and this one will be used to determine when she can reutn to Phoenix. She may be home sooner than we expected.

More later...

Out of the Hospital Today!

Emily got the news that they are going to discharge her from the hospital today! Right on time. She really needs a change of scenery.

The last couple of days have held a lot of challenges for Emily. Tuesday she was having trouble with the pain meds and the anti-rejection medication was causing huge emmotional issues. By Wednesday, she was through the worst of that and was able to start walking. The physical theripists made it by and got her on her feet. It was tough but they got her through it. This morning she was climbing stairs!

She will need the PIC line and the pacer leads removed this afternoon and then by about 8pm she should be on her way to the Ronald McDonald House. She has appointments tomorrow and Sunday at UCLA, so she is far from done. She has her next biopsy on Tuesday but she will be sleeping in a real bed.

This is all so amazing!

The Last Few Days

The last few days have been very good for Emily. On Sunday she got a visit from Corrie Llamas from the LA chapter of the Make-A-Wish foundation. She was there to deliver Emily’s wish! When Emily first arrived at UCLA one of the doctors wanted to know if there was anything that Emily wanted to help pass the time. The subject of a laptop computer came up.


The doctor told Emily that she would check and see what she could do about getting her one. Kathy and Emily both thought that she was going to check with child life to see if they had a loaner. Instead she contacted the Make-A-Wish foundation. A few days later they requested that we give them specific details about what kind of laptop Emily wanted. Grandpa printed all the laptop information from the Dell website but before I had a chance to talk to Emily about it she was sedated and put on the respirator. The first couple of days that she was sedated I spent looking over the laptop specifications. I picked a nice mid-range laptop that had wireless and a DVD. Nothing too fancy but something she could use. The following week Kathy gave the MAW people the info and filled out some forms. Then followed more forms from the Phoenix chapter.

Then came Emily’s surgery and all thought of laptops was gone. Then, a couple of days after the surgery Corrie called and wanted to know when she could deliver Emily’s wish – we were shocked – we had forgotten all about it. She came to the hospital on Sunday with much more than we expected. She had the top of the line Dell laptop, speakers, head-phones with mic, a digital camera and a printer-fax-scanner combo! Emily was amazed and shocked. Corrie also brought fresh fruit, fruit juices and a tart for a little party. Dell, Kodak and the Make-A-Wish Foundation really came through for Emily. This is all stuff that Emily will be able to use for years to come. Thank you Corrie!

On Monday Emily was really starting to feel good. Her pain was under control and she was able to move much better. She could get in and out of bed on her own but she still wasn’t walking too much. This was the first day that she started to believe that her time in the hospital was getting close to an end.

Today, Emily had her first heart biopsy. They will not know the results for a day or two but this is a critical step in getting to leave the hospital. They removed the central line in her neck after the procedure. This will really help her feel more comfortable. She had a minor incident of atrial flutter on Monday night but the doctors are sure it is a side effect of the medications and not a sign of trouble. Even so, they will be watching very close for the next couple of days.

As of right now, Thursday seems the most likely day for her to leave the hospital. They may push that back to Friday if she does not get enough time in with the physical therapists. We are so close now; I just can’t wait for her to get out of the hospital. This weekend I am going over and I am bringing a couple of Emily’s friends to visit. By then she will be in the transplant apartment at the Ronald McDonald House. This should be a good weekend.

Over the hump

Emily had a much better day today. The pain is getting more managable and she is eating more. They had her sitting in a regular chair for about 30 min. while they changed her bed. She said it made her dizzy and he feet felt funny but her back felt great. In the afternoon she had the last of the chest tubes taken out which is also helping her move better. They are a major source of the pain. All in all it was a good day. She is on track to be out of the hospital by mid week!

Day Four...

Today was a tough day for Emily. The pain is at its worst and the medication has not been helping. It just nocks her out. She did sit in a cardio chair for a while but getting her in was very traumatic.

The doctor did say that is not uncommon for heart surgery patients to have some depression on about days 3-4 and this is true of Emily. She will feel much better once all these chest tubes are out. She is hangin' in there and I am sure tomorrow will be much better.

Day Three...

September 29, 2005

10:30 a.m. PST

Emily had two of the four chest tubes removed. One of her lungs is a little deflated so they left the side tubes in until they lung expand more. This was a painful procedure but an obviously important step.

12:00 p.m. PST

Emily has been having some very painful back spasms. It seems to me that these are more painful than the surgery but she cannot move to stretch the muscles. They got her some hot packs and some medication. She slept for most of the afternoon.

4:00 p.m. PST

Emily is awake and feeling better. Her back is not givering her any trouble and she was able to sit up in the bed more. She was also able to do some of her breathing exercises. She has a laptop computer, from child life, so she can watch DVDs. She ordered dinner but it never arrived. She will need to try solid food tomorrow, I guess.

Day Two...

September 28, 2005

9:00 a.m. PST

We got up early and got beck to the hospital. We couldn't get in to see her right away because the unit was closed for a surgical procedure. We just have to wait.

11:00 a.m. PST

Emily had the breathing tube removed! She is now breathing on her own and doing very good. She still cannot talk and she is worried about the pain of caughing.



6:00 p.m. PST

Emily is still very tired but is doing great. She is eating ice and had an orange popcicle. She has to start slow with the food because she has not eaten solid food for a month. Tonight she will be moved from the Cardio ICU to the PEDS ICU.

Emily’s New Birthday!

September 27, 2005

12:30 a.m. PST

Krystal and I made it to the UCLA Medical Center in about 5 ½ hours. Emily was supposed to have already been in surgery but issues at the donor hospital delayed the start of the surgery. We got to spend about 15-20 min. with her. She was very happy to see use and I can’t describe how good it felt for me. She was in great spirits and was ready to get this done.

1:00 a.m. PST

Emily is moved to the surgical area. It was quite a sight watching the move. She had a huge amount of equipment so there were several people helping. Since she has been on a respirator prior to the surgery she was ‘bagged" on the way to the O.R. At one point the guy squeezing the bag could not keep up and Emily took over the duty herself. In the surgical area we met members of the team and were given an outline of what would be happening. The most important step in the beginning is the ‘visualization" of the heart. It is not until they see the donor heart that the final decission is made to proceed with the surgery. We would be getting a call once the visualization was complete. This was going to be a tough wait.

2:30 a.m. PST

We got the call in the surgical waiting area that they had completed the visualization and the heart is "perfect" for Emily. Wow! What great news. Now she will be sedated and they will complete the sugical prep. The ETA on the heart at UCLA was 3:45 a.m. We found out later that Emily moved herself onto the operating table!

4:10 a.m. PST

The next call from the O.R. and Emily has been placed on the heart-lung machine and the heart was at UCLA. Time for the transfer. The next 2 hours are going to be even tougher!

6:00 a.m. PST

Emily’s new heart is in and beating on its own! She is off the heart-lung machine and now they will watch her for about 2 hours to make sure there is no bleeding. After that they will close her up and this part will be over!

9:30 a.m. PST

Emily is back in the 4East ICU. She is still asleep but everything is looking really good. The new heart is being paced and they tell me it looks normal, I’ll take their word for it. She has very few drips going and this makes the staff happy as well. All of this is great news but I suppose I don’t fully understand how good it is. I am just happy to see her. We were all exhausted and so it was time for food and sleep. We headed back to the Ronald McDOnald House for some sleep.

4:00 p.m. PST

After about 3 hours of sleep we are back at the hospital. Emily is awake and doing great! No signs of complications and very little bleeding. She still has the respirator on and a bunch of tubes sticking out be she looks so much better than just a few hours ago. They will begin to turn the respirator down today in preparation for removing it in the morning.

9:00 p.m. PST

After dinner it was back to the RMH for sleep. What an increadible day! Words cannot describe the emmotional rollercoster of this day. Emily is doing great and that is all that matters!

THE CALL!!

At 4;45pm PST we got the news that they have found a heart for Emily! I can't tell you how great this feels! Emily is very excited. She will be going into surgery sometime after 10pm PST. Now is time for the hard part. I am heading out to LA right now and will get there about midnight.

At this time of great joy for the Brightwell family I wish to express to the family of the donor my sorrow for their loss. I have such mixed emotions about all of this. I want them to know that their loss and their willingness to donote, have given Emily a chance. It truely is the gift of life. Thank you.

More later!

25 Days...

As of today Emily has been on the transplant list for 25 days! Wow! They keep saying it will be anytime, and I believe that it will, it is just hard waiting. Today also makes 8 weeks in the hospital. That is just incredible. We have been taking his one day at a time and they have really added up.

I just got back from LA. The girls and I drove over early Friday morning and arrived about noon. Sharleen was very nervous about seeing Emily. The last visit, Emily was on the respirator and heavily medicated. She was only able to visit Emily for a few minutes and was very upset. This time Emily was bright eyed and happy to see her sisters! Even though she is still on the respirator they have the medications dialed in so that she is awake and comfortable. This was a great surprise for Sharleen – she has been very worried about Emily and I think this visit will help give her confidence that Emily will be OK.

The girls do not have the attention span for long visits so Mom got to spend a lot of time with the sisters. On Friday they went to the movies – Corpse Bride. Emily was very jealous! Dad got to do the bedside duty most of Friday and Saturday. It was good fun (well, maybe fun is not the right word). It feels good to be with her. When I am back in Phoenix my imagination takes hold and it is very tough to stay positive. When I see her I know that this will all work out.

On Saturday I got a call from my sister, or maybe I called her, and she told me that the West Valley View had run an article in the Friday edition about Emily. This is our local paper and we had some contact with them but had no idea when the story would run. The print edition included several photos that I had sent them. The story is really nicely done and draws heavily from my blog entries – but with the spelling corrected. Unfortunately, I did not get a copy before I went to LA. Emily can’t wait to see it. My Dad got a few extra copies to send to friends and family around the country.

Now the part that you have all been waiting for, Emily is doing well. She is in good spirits and has adjusted very well to her new reality. She communicates freely and still has a sharp tounge (pen). All the doctors and nurses love to come and talk to her. She gets staff members stopping in all the time to check on her. These people really care about their patients. Today, Emily and the girls made her name in big letters to hang on the wall. It was fun to watch and help.

Enough for now... I am hoping for a 2am wake-up call so I can drive back over! Thanks to everyone who has visited and commented. Thanks for the emails, cards and letters. Thank you for the donations and offers of assistance. All of these things are very important and helpful. Soon, Emily will be able to thank all of you herself!

Same Story…Different Day

Not much has changed in the last couple of days – Emily is still waiting for her turn. She and Kathy have been passing the time as best they can but I am sure the waiting is tougher than I can imagine (and I can imagine a lot). They got another visit from the transplant surgeon and he told them that they had another offer on Tuesday night. They turned it down. That makes 4 hearts - that we know of - that they have refused. It is comforting to know that they are comfortable enough in Emily’s condition to take their time and make sure they get the best heart for her.

On Friday, Delaney, Sharleen and I will be going to UCLA for a visit. Emily is really excited to see us and I can’t wait. I just want to go now!

On a side note, azcentral.com ran a story yesterday about the Scottsdale Mayo Clinic. It seems that they will soon be able to perform heart transplants. This is too late to help Emily but is great news for the people of Phoenix. Right now, Phoenix residents have to travel to Tucson or Los Angeles for this procedure. It does not make much sense for the fifth largest city in the nation to not have a heart transplant center. Right now 60% of the transplants in Tucson are valley residents. There are also a large number of valley residents in LA for transplants.

Time Stands Still

Emily is still waiting for her heart. She has been moved to an isolation room in the PEDS ICU. Kathy says it is very quiet and that Emily has been resting much better. Yesterday, she got a package with some cards and letters from some school kids in Missouri. They really made her day! It took her more than an hour to read them all. Now she needs to reply back, that should keep her busy for a while. Thanks kids!

I will post more news when I have it. Things are really slow and tense right now. Thanks again to everyone! You help and support are greatly appreciated!

Fund Raiser

Yesterday, Kathy’s friends from her job at HEALTHSOUTH hosted a fund raiser yard sale in the parking lot. I stopped by with Delaney and Sharleen to say hello and thank you. It looks like they had a great turnout. Thanks everyone! You have no idea how much this means to Emily and the rest of the Brightwell family.

Emily is still waiting. There are a lot of heart transplant patients at UCLA right now and the surgeries have been happening very regularly. Emily is getting close. She had a good day yesterday. Mom is keeping her engaged in conversation even though she has to write everything on paper. This will inspire her to learn sign language, which she as always wanted to do. That way, if she ever has to do this again it will be easier to communicate. She also made a list of all the things she wants to eat when she gets out of the hospital. She hasn’t eaten anything for about 2 weeks.

More later… As usual, thank you all for your support, kind thoughts and prayers.

Another Day...

Another day has passed, or is it two, and we are still waiting. No real change in Emily’s condition. She is starting to have some stomach trouble again so they have switched all her meds to I.V. She seems to be dealing better with the breathing tube, which is good because she is awake most of the day. Yesterday she met with the transplant surgeon and he is still confident that it will be soon. Emily did not let him off the hook that easy, even with having to write all her comments. What else can he say? When it is time it will happen, I just hope it is soon.

She had another visitor yesterday. A “famous” Hollywood stylist (didn’t get the name, sorry) came in and did hair cuts and styles for several people in the hospital. Emily was one of them. She was very excited and sat up while her hair was done. No pictures of this event, unfortunately. After her surgery he invited her to come to the salon for the works! She will love that!

Thank again for all your support and prayers. We are getting close!

Still Waiting...

I came back from LA on Sunday. I was really tough to leave, as usual. Not much has changed over the last couple of days. Emily is still in the PEDS ICU and is still on the respirator. She is still very uncomfortable but the doctors think this is better than taking her off the machine. She is awake, but groggy, most of the day. The doctors keep saying it will be anytime, but who knows.

Kathy got to meet another family from Arizona the other day. They are from Chandler and their 10 year-old son just got his heart over the weekend. They are also staying at the Ronald McDonald House and their son is at UCLA. She got some very valuable information about how the transplant will impact our lives. We still have so much to learn.

I have heard that there is a family from Arizona with twins that are at UCLA. I guess they both need hearts and are VERY young. We have not met them but I am sure we will.

More as I know it….

Hell Week

I am sorry it has been so long without any updates. I got back from LA on Monday and was not in town for much more than 24 hours before I was back on the road. I am writing this from the LA Ronald McDonald House.

On Tuesday, at about 11 am Emily's defibulator fired a shock into her heart. It had detected that her heart had gotten stuck in a very bad rhythm and just before she blacked out it went off. She felt the whole thing and thought that her mom had hit her in the chest with both hands. After the shock they gave her some medication fro the pain and she was able to get some rest. Later in the afternoon, while she was talking to a transplant patient who came to talke to her, it fired again. Then in quick succession it fired several more times. This caused a great deal of pain and panic which just seemed to feed the problem. At about 4pm PST she was sedated and intubated.

My sister and I drove over Tuesday night to help calm Kathy who was very near an emmotional breakdown. We spent the next two days together with Emily. It was very tough to see her with the resperator connected. She wakes up every once in a while and the first thing she wants to know is if she has a new heart. It is very touching. On Friday my parents drove over with the two younger kids.

I took my mom and dad to see Emily today and Kathy stayed at the RMH with the girls. It was really good for Kathy to spend the day with them becasue it has been so long since they have been together. My parents had a tough time with the visit but they came through it OK. Emily is resting and her heart is doing much better. It was good for them to see that she is being well cared for by this excellent staff. UCLA has really wonderful people!

As for Emily, not much has changed. We are still waiting for a heart. She is sleeping most of the time now and when she is awake she cannot talk. Through all the medication Emily is still there and is still fighting. She will get her heart and the doctors believe it will be soon. Unless something happens tonight I will be returning to Phoenix tomorrow. I hate leaving...

Back From UCLA

I made it back from my trip to see Emily yesterday. It was a good weekend, but not great. The drive over was a little tough but I needed the time to think. I did have a little trouble finding the hospital once I got to the general area. When I got to Emily’s room she was feeling pretty down and was really uncomfortable. She was very tired and stressed. After about and hour of crying she started to feel better.

On Saturday they discovered that some of her discomfort was from a mild infection and they quickly treated it. This really helped her feel better and by the end of the day we were all laughing and joking. It was a good day. Sunday was also a good day but the strain of waiting was starting to come back. She really did not like it when we had to leave at the end of each day.

We watched a lot of TV over the weekend. This is about the only thing that she can do right now. She has IVs in both arms and this makes it tough to do much of anything. The ICU is not really setup for comfort as much as for medical necessity. It is strange to see her watching so much TV because it has never been her thing. Do what you have to do to get through the day.

UCLA Medical Center is a very scary place. It is huge! It is old! It smells funny. It is definitely an inspiration for those scary hospital movies. The people are amazing. They really know what they are doing and they work very hard. Needless to say, there are a lot of very sick people there and the staff is always on the move. I am more convinced than ever that Emily is in the best possible place.

Kathy now has her cell phone, which has been a great comfort. I want to say a special thanks to Daniel Garcia at Verizon Wireless for helping us get these phones. I just know that the call will come while Kathy is away from the hospital – these could literally be lifesavers! Thank you.

Kathy has a room at the Ronald McDonald House. It is a long way from UCLA but there is a bus line that goes straight to the campus, so it will be fine. The RMH is like a cheap motel. It is not fancy. There is no cleaning crew; each family is responsible for washing their own linins and cleaning the room. They have a communal kitchen were a family can cook meals and store food. They have a secured parking garage and you can’t get into the building without a room key. The beds are terrible and the plumbing has problems. There is a leaking ceiling outside Kathy’s room. All in all it is one of the best places I have ever stayed. Please, EVERY time you go to McDonald’s put some change in the RMH collection box. This is a great place that is doing excellent work.

There is so much more to say but it is all jumbled up in my head. The stress and pressure is incredible and I can’t even imagine how it is for Emily. She is doing good and misses everyone. She sends her thanks to everyone who has expressed support. Thank you all!

More later….

Good News

Emily was placed on the transplant list as of about 5pm PST. She is on some new medication and is stable and was even able to go to the nurses' station to use the internet! I.V.s, monitors, catheters and all! Hi Emily! She also had a chance to talk to a teenage transplant patient and got some first hand info from someone her own age. Kathy said it seemed to help her be more relaxed. Emily is also beginning to have trust in the staff and is opening up and telling them how she is feeling. This has been a really big issue for her in the past so this is very good news.

Kathy got a room at the Ronald McDonald House about 5 miles from the hospital. She got all the stuff there and is finally getting a chance to get organized. I think she will be in much better shape having a real bed to sleep in and having to get back and forth to the hospital. She bought a bus pass and will have to get the schedule in the morning. We talked about the need for her to always have cab fare with her because if the call comes she has to be at the hospital quickly to sign the consent forms. That means that my cell phone mission is critical. Tomorrow morning I will have the phones and I will be driving over tomorrow afternoon. From this moment forward Kathy must be able to be contacted immediately.

I am going to Cali today and will not be home for a few days so no updates over the weekend. I will have some news and more pictures in a few days. Thank you all for your caring and support. Keep praying!

Latest News

Emily has been moved from the PICU to the Cardio ICU. At first, when she was moved they were planning on sedating her putting her on an intubator. They are very concerned about her heart function and want to relieve as much stress from her heart as possible. They have since decided to hold off of the sedation and intubation for now but they are prepared if her heart condition worsens. If they do sedate her it will be for the duration of her wait, which could be some time. There are a still a few more tests to complete and it seems as if they want to have her on the list by end of today or early tomorrow.

The stress level for Emily and Kathy is very high right now.

First Day at UCLA

Emily’s first day at UCLA Transplant Center went well. Kathy has completely changed her views about the place and Emily is hangin’ through some very tough tests and procedures. She has several more tests left but the staff is moving very quickly. They plan to have a meeting about her on Friday to discuss her candidacy for transplant. It wasn’t until I spoke with the great people at the Nick and Kelly Fund that I realized why they are moving so fast – it is a holiday weekend and they want her on the list if a heart becomes available. Wow… That is a tough one to think about. I really hope that everyone is safe this weekend but if the inevitable happens she is in the right place.

Speaking of the Nick and Kelly Fund I spoke with them yesterday about their program to help families with travel and living expenses associated with medical treatment – they work specifically with pediatric cardiac cases. They are very easy to talk to and really have a lot of experience helping people in our situation. They are going to be a big help over the next few weeks. They are a private organization that has no federal financial assistance. If you would be interested in making contributions to this excellent organization email me for the contact info.

I will be going over to see her this weekend and will have some new pictures when I get back. They are very strict at UCLA so no visitors other than family. I will be leaving the little ones at Grandmas. I am trying to workout a deal to get a couple of wireless phones to help with the communication issues. They also put in a working phone in Emily’s room, but it doesn’t work very well. I will have to bring home most of the stuff that Kathy and Emily took with them as there is just no room for it. If you feel the need to send care items or packages please do not send these things to the hospital. Send them here and I will make sure she gets it when she comes home.

Emily has already amazed the people at UCLA with her bright smile and attitude. She has charmed them in less than 24 hours. They are just as amazed that as all this terrible stuff is happing she is still smiling and laughing. Amazing!