Transferred

Emily was transferred to UCLA yesterday. She and Kathy left at about 2pm in an ambulance. The trip took about 8 hours and Emily was in a lot of pain. Kathy said it was the worst ride she has ever taken. Once there, the medical team immediately started doing tests on her. Kathy told me that the place is a nightmare and was really scared. Emily is temporarily in an isolation room in the PICU but she will be placed in a bed in the open ward. There will be no privacy (other than a curtain) and it will be very difficult to contact them. The phones don’t work so she has to go down the hall to a pay phone. She is very worried that Emily will not do well in this environment. In addition to all that, Kathy will not be able to stay with her. This morning she will be working with the hospital to find a place to stay that is close (walking distance). Of course, the insurance will not cover the living expenses and these can be quite high (maybe as much as $100 per day for the room). Hopefully, they will be able to help with all the options. We did apply for help with the Nick and Kelly Children’s Heart Fund. They specialize is help people with travel expenses related to medical treatment.

This is all for now. I am just sick about all this. I wish I were there but I can’t be…More later.

CORRECTION: If you would like to help, here is the account information: account name Emily Brightwell at Wells Fargo bank. You should not need an account number to contribute. If for some reason the number is required please send me an email. Do not worry about security as there are only two people authorized to remove money from this account and it must be done in person with ID.

A Quick Update on Emily's Condition

It looks like Emily will be going to UCLA for her transplant evaluation. She will be transferred via ambulance either tomorrow morning or Wednesday morning. Kathy will be traveling with her and staying with her. I will be staying home with Sharleen and Delaney. I have no idea how long the evaluation process takes but I would guess a couple of weeks. If she is a candidate for a transplant then she will be staying there until the surgery (it can take about 3-4 months to find a donor). If she is not a candidate then she will be returning to Phoenix; possibly coming home but maybe returning to Phoenix Children’s Hospital. This is not very likely. It seems to me that they would not be sending her to LA if they were not already 90% sure that transplant is the only option. It looks like more waiting.

Emily has been doing well (as possible) through all of this. She is still in some pain after the pacemaker surgery and the medication does not agree with her. She is very scared but she plays the tough kid very well. She is always more worried about the feelings of the people around her than she is of her own feelings. The only time it is really bad for her is when she is alone. She likes visitors. She will not be getting very many of those is the weeks to come.

I want to take a moment to thank all of our friends and family for all there support. We were really hoping that last week as the light at the end of the tunnel and now we know that there is a LONG way to go. The pressure and the stress have been unbearable. It is so easy to watch something on the Health cannel and think “man that would really suck,” but the truth is some much harder than you can imagine.

Many people have offered to help in anyway possible and for this I am grateful. The truth is we will likely need a lot of help. We have setup a fund at Wells Fargo Bank for help with the medical bills and expenses. It is called the Emily Brightwell Fund (if you need the account number please email me). So far, the insurance company has been great but they will not be covering everything. I don’t know how much all this will cost. The cost issue is something that I can understand and so I find myself thinking about it a lot. It feels so shallow and insensitive to think about money at a time like this, but I am so completely powerless to do anything else.

I will post more as I know more…

Bad News

The news that we were hoping to never hear was delivered today. The doctors have decided that they have exhausted all options for getting her heart to function normally. The pacemaker is working but the heart is not responding properly. They have not been able to find a rhythm medication that works either. Her heart's condition is not getting any better; it is at about 40%. All this means that the transplant option is now the only option (provided nothing changes miraculously).

Sometime early next week Emily will be transferred to either UCLA Medical Center or Loma Linda to begin the transplant evaluation. We won't know any more specific info until Sunday, most likely. We do know that she will be there for 3-4 months before the transplant (all this depends on a donor) and then another 2 months of recovery time.

I am not sure how to take all this but Emily continues to inspire me every day...

More later...maybe even a picture.

Still not Home

Emily is still in the hospital. We were really hoping that today would be the day but thinks aren’t going as smoothly as the doctor’s hoped. The first day after the surgery she was very nauseous and had some vomiting. This caused her to have trouble with some of her medications. This morning she was feeling “weird” so the doctors hooked her up to the monitoring equipment for her new pacemaker and discovered that she was in atrial flutter again. So they sedated her and used the defibrillator to shock her heart back to a more normal rhythm. It took several hours for her to shake-off the effects of the sedative but she was able to eat some lunch. So we are back waiting…

After the Surgery

Emily had her pacemaker implanted this afternoon. She went into surgery at about 3:30 PM and was back in the room by 6:15 PM. Everything went well with the procedure and the doctor seems very pleased with the results. She was in quite a bit of pain afterwards but the doctor told her that she will get to go home on Wednesday. She has already had an improvement in her rhythm and her blood pressure is better. She said that she can actually feel her heart beating – always a good thing. More updates and picture when she gets home.

This picture was from a couple of days ago - she is not this happy right now!

MRI

Today Emily has an MRI. Yesterday we had a talk with the cardiologist and he explained the details of Emily’s upcoming surgery. He has decided that she needs to have a pacemaker and a defibrillator implanted. This is a very complicated procedure and he went into detail with us about all that will happen and what could happen. It is frightening but Emily is excited to get it done. It means that if everything goes right she will get to come home just a couple of days after the surgery. Within about 10 days of coming home she will be able to return to school.

The cardiologist is very pleased with her recovery and seems optimistic that with the pacemaker and medication she will continue to improve. He has put the idea of a transplant on the back burner but he still says that it may be needed. He also mentioned the possibility that over time she may improve to the point that the pacemaker and the medication are no longer needed. Only time will tell but things are looking better every day.

More later.

An update on Emily’s Condition

It has been a rollercoaster few days but things are looking up. Over the weekend things were looking bleak. It seemed that a heart transplant was not so much an “if” but a “when.” The big problem that she has been having for more than a week is what is known as V-Tach (Ventricle Tachycardia). This is when the lower part of the heart beats rapidly and uncontrollably. This problem can only be treated with the right combination of medications or a transplant (this is greatly simplified but quite frankly I have a very slim grasp on all this). Last week it looked as if the chances of getting this under control were not very good. Then on Tuesday the doctor made another change to the medications (one of dozens so far) and it seems to have helped stop these runs. As of today she has gone more than 48 hours without any V-Tach rhythms. This is excellent news because it means that the likelihood of a transplant is greatly reduced. The other rhythm problems (and there are many) seem to be issues that have more treatment options including a pacemaker. It is still going to be several more days before we will know for sure but this is a very positive development. When I visited her this evening she had 2+ hours of Sinus rhythm!

Keep the prayers and positive thoughts coming!

Emily

I just wanted to share some news of my daughter, Emily, with everyone. If you don't know she is in Phoenix Children's Hospital, being treated for irregular heartbeat. She has been there for a week and things have not improved much. The doctors have already shared with us their fears that if things don’t improve significantly over the next few days she will be transferred to the University Medical Center in Tucson, AZ for a transplant evaluation. She is, naturally, scared but she rarely shows it. She is still smiling and cheerful. The doctors are continuously amazed at how good she looks for someone who is so sick.

Emily and the rest of the Brightwell family thank you for all of your prayers, expressions of support, positive thoughts and positive energy. We will take all of these things we can get.

I will post an update in a few days.