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!