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!