Halloween 2008

Just a few pictures of what used to be our favorite time of the year.

One Year Later

Well, today marks the one year anniversary of the worst day of my life. I knew that the entire week, starting with Kathy's birthday last Friday and ending on Nov. 3, was going to be tough. I finally realized that there was no way I could work through this time so I have taken some time off of work.

I really had no idea what I was going to do today; what are you supposed to do at a time like this? Kathy and I decided to just stay busy so we cleaned the house from top to bottom...it needed it. After the girls got home from school we went to the cemetery. After dinner we watched Sharleen's new DVD of Singing in the Rain that she got for her birthday.

By way of comparison today was nothing...but I am not sure what I thought it would be. Nothing has changed, but I guess I am becoming used to the idea that this is how things are. I cannot believe it has been a year...it seems like yesterday and a hundred years ago all at the same time.

Camp del Corazon

Words fail me right now. I finally watched the Camp del Corazon 2008 video...

http://69.228.121.245/VIDEO/CDC2008VIDEO.WMV

I miss her so much.

Emily did the narration for the 2007 video to...

http://69.228.121.245/VIDEO/CDC2007VIDEO.WMV

Scared

OK, I know that just yesterday I was lamenting the loss of political posts and how I wouldn't be doing it for a while. Well, that was before I found this series of articles - http://www.ibdeditorials.com/series8.aspx. This scares the crap out of me! This guy is very close to having the power to do some really terrible things to our country.

More visitors

I noticed tonight that I have been getting a respectable increase in visitors over the last couple of weeks. Nothing spectacular but noticeable. I quickly realized that we are getting closer to the election and I am getting some hits on some old political posts. I am sorry that all the political stuff is so outdated. You would think that with this incredible election season I would be writing all sorts of offensive things. While I am very interested in what is happening, this all still seems to petty to write about. Maybe I will be back to my old self in time for 2012.

Pinetop-Lakeside Trip

Last weekend the girls, Kathy and I went up to the Lake of the Woods resort in Pinetop-Lakeside, AZ. We stayed 4 nights in a very nice cabin and did a ton of fishing.

They have there own private lake that was loaded with fish. The fish were very active bt very small! It was all good fun and the weather was perfect.

Sharleen caught her very first fish ever and then follwed it up with 17 more. She had 18 fish in 3 days of fishing.

This was a really nice getaway and the resort is highly recomended. It is a nice balance between roughin' it and staying in a hotel.

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.