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….