This has been a very busy day for Brea. I was able to hold her for about thirty minutes and later this afternoon she was able to sit up in a special physical therapy chair. She really enjoyed the change in position and we read several books, played with a few little toys, watched a Barney video and sang some songs. I wish Danny and the kids could have been here for it because for a brief time it was almost as if she wasn't really sick except for the fact that she can't make any sounds and looks so weak.
The transplant team discussed putting a mechanical heart in Brea within the next week or two. The device is called the Berlin heart and it would take the load of work off Brea's heart while she waits for a transplant. It is not an FDA approved device but it is used a lot in Europe. A doctor from there would come here for the surgery and will be here for a few days after the surgery to make sure the device is working properly. This is not a fix and she still needs a transplant BUT it might spare her kidneys and other organs and keep her stable until a heart is found. The better condition she is in when she gets her transplant the better she will recover. They will be doing an echocardiogram on Friday and will determine then if it is time to proceed with the Berlin heart.
Today they also increased her Captopril and she has handled it well so far. She is much more alert today (which is why I am late posting) than she has been in the past and I think the doctors finally found a good balance of sedatives to keep her calm yet alert and on a somewhat normal schedule. The balance has also produced more "code browns" on a regular basis.
The kids and Danny finally made it up around 7:00 pm tonight. It was so good to see them! Brea had the biggest smile on her face when she saw her Daddy. They have gone to the hotel for the night but there is something so comforting just knowing that we are all in the same city even if just for a couple of days.
There are so many people that I need to say thank you to but I'm sure that I would leave someone out and I would never hurt anyone's feeling intentionally so I'd just like to say a great big thank you to each and every one of you who have prayed, sent cards, care packages, letters, drawings, kept the kids, fed our pets, made meals for Danny and the kids and organized things for our family. You will never know how much it has meant to us.
Please keep praying for a miracle for Brea's heart. I really don't want her to need ANY surgery at all but especially not two major open heart surgeries (the Berlin and then the transplant). Also continue to pray for the kids and Danny. The reality of how long we may be apart is starting to sink in and it is taking its toll on all of us. As we sat around the table in the cafeteria tonight eating dinner I couldn't help but wonder when we would be together again as a family of FIVE sitting around our own kitchen table eating dinner.
Last night someone by the name "Me" posted a message in our guestbook. They were concerned that I am not paying enough attention to Brea and putting too much focus on God. I just want to say to "Me" that you are in my prayers. I want to assure you that Brea's every need is being met by both me and the excellent medical staff here at ACH. As for God...Without God I couldn't get through this. I wouldn't want to walk through everyday life without my faith so why would I leave it behind in the most trying time of my life? I hope someday you will have a personal relationship with the Lord that will bring you peace and hope in times of trouble.
Goodnight from the bedside of a wide awake princess who prefers to play with her majic wand than sleep! (11:53 pm)