The doctor has been in and said that
Brea is doing great! She is off Oxygen now and as of today they are stopping her Bumex IV (diuretic) and will be giving it through the feeding tube. They are also cutting the Milrinon (heart med.) in half, starting Cumiden (sp?) in hopes of stopping the Heprin IV within the next 4 or so days and going to full feeds through her feeding tube. Tomorrow I will get to give her a bottle to see if she remembers how to eat and they will remove her foley. The doctor called the changes today “housekeeping” while we wait on a new heart.
Miss Brea did physical therapy today for the first time since her surgery! When the therapist sat her up in bed she immediately saw her
Berlin heart and reached to touch it. She sat (with support) and played for almost 30 minutes and she even had a chance to stand (with support) for about 30 seconds. It was obvious that she is very weak and that it was very uncomfortable for her but she was a trooper! She got really excited when she saw the basket of toys and she started reaching for them.
During the night
Brea ’s Art line came out. The art line is an IV monitor inserted in an artery in her wrist that measures her blood pressure. Because of the Heprin that she is on, there was lots of bleeding and a big mess but the doctor said that she is doing well enough to not need it so they will not be putting it back in until she goes to the OR for her transplant surgery. We now have two free hands and I’ll be able to put little clothes on her since she will get her IV medicines through her CVL in her neck.
As I sit here typing this update the song “Our God is an Awesome God” is playing on Brea’s little CD player. The thought that comes to mind is how awesome our God truly is to bring this little girl all the way from to the to have this opportunity to have a new heart. In she was abandoned by her birthmother and labeled an orphan…a child that belonged to no one. Now she has not only a family that has claimed her as their own who loves her and is praying for her but she also has people all over the world who love her and are praying for her. Our God is an awesome God!
Every week new families come here to the CVICU and every week families go home. It is always wonderful to see a family take their child home and so many of them stop by
Brea ’s room on the way out to say goodbye and to exchange addresses. I’m constantly amazed at how close you can feel to someone that you’ve only known for a short while but just like adoptive families, heart patient families have experienced something that gives them a unique bond. Sometimes the outcome is not good and families leave with empty arms. The broken heart that brought their child here quits working no matter how much medical intervention has taken place. Every time this happens a little piece of each family here dies with that child. We all know that our story has the potential to have that same outcome. One of our favorite doctors here once told us that all the medicine and doctors in the world couldn’t save
Brea if it wasn’t God’s will and I agree. Our days are numbered and only God knows when our hourglass will empty and our time here on this earth will be done. ’s family said their final goodbyes yesterday at his funeral and during the night the phone in the waiting room rang to let one of the other families know that their child was not doing well. The family has now gathered and they are waiting to see how their story will end. They don’t seem to be a family of faith so I’m asking you to pray for them today. Pray that whatever God’s will is for their little one, He will give them strength to get through the days ahead.
Thank you for your continued prayers for
Brea and our family. The kids are doing well with their Godparents and will start school in
Arkansas (3 hours away from ACH) on Monday. They are being kept busy with horseback riding, ice skating and rock climbing this week while on Spring break. I miss them terribly but I know they are in good hands and it is comforting to know that they are 3 hours away instead of 8.
Good afternoon from the bedside of sleeping beauty.
