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…