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.