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!