|Brea had a good night and she is now down to just one medication for her blood pressure! It is even a medication that can be taken orally and she will probably go home on it after she has her heart transplant. The doctor also adjusted her ventilator to the lowest setting and on Wednesday they are going to try to take her off of the ventilator. Please pray that Brea will be able to breathe on her own when the ventilator is turned off tomorrow. Brea remains in good condition for the transplant surgery IF the transplant team should get the call with an offer of a heart.
When the doctor first came to us and told us that Brea's heart would need a "bridge" to help her make it until a donor heart could be found, I felt ill. I couldn't believe what I was hearing. I was told that it was possible that the device from Germany wouldn't make it in time to help Brea and because the device is not FDA approved, there wasn't a complete one here in the USA to get for her. They had to take pieces and parts from all over the place including Germany to get everything they needed to do the surgery. They also had to get an emergency compassionate care approval from the FDA before the device could come through customs and into the USA. That was on a Friday and the FDA didn't approve the Berlin heart for Brea until the following Monday. The device was ordered and on Wednesday afternoon the hospital finally received everything they needed to proceed with the surgery on Thursday. God was watching over Brea and her little heart was able to hang in there until the Berlin could be surgically installed but for some children their little heart may not have sustained them and they would have expired before the Berlin could be implanted. We vowed that once Brea was better we would do all we could to prevent any other child from having to wait for this device. We had no idea that our first opportunity would come so quickly. This morning we were approached about participating in a study to try to get the Berlin heart device approved for use in the USA. We agreed to participate and we pray that next time a child needs it, it will be available without a one week wait. Lives will be saved with this device because it is the only ventricular assist device small enough to be used on babies and toddlers. Brea is already making a difference in the lives of others...even while she waits for her new heart.
Recently I told you about a little 11 month old girl who received a new heart here at ACH. Her surgery was 9 days ago and today I saw her, her mom and her nurse out for a walk in the little red wagon. Her mom was wearing a smile that said more than a thousand words! I can't wait until the day Brea can go on a wagon ride with her new heart.
I know that I've mentioned this before but I wanted to mention again that I CANNOT email out from the hospital. It has something to do with the hospital's firewall. I've received a few email from people wanting to know how they can mail Brea a card. The address is:
c/o Arkansas Children's Hospital CVICU
800 Marshall Street
Little Rock, AR 72202
I would love to be able to answer emails but unfortunately I would need some type of cellular device and as much as I hate to admit it, I am not very computer savy. I'm sure that my seven year old could probably figure it out for me if he were here but unfortunately, he isn't.
There are so many people that I need to say thanks to and so many thank you notes that need to be written but I'm not sure when I will ever get to them all. So many have done so much to help in so many different ways and we are so grateful. Just the other day we learned that one of our neighbors has weeded our flower beds and mowed our lawn. I am in awe of the kindess of friends, family and strangers but then I go back to Philippians and smile because God has already promised that He would take care of us and He is through so many of you.
And my God shall supply all your need according to His riches in glory by Christ Jesus. Philippians 4:19