My Heart Is Broken

We ended up in the waiting room until a little after 8:00 (13 hours total by the way!). We finally called and asked if we could come up and see her. They said that they had to do another procedure on her but that we had been through so much before with her on ECMO, that they let us in to sit outside her room. When we got there Dr. K said that one of the cannulas (the needle like probe that is in her heart hooking her to the ECMO machine) was not functioning properly. So they had to scrub in like a surgery at her bedside and re-insert the cannula. The procedure took a little while but went well. There were several medical personnel at the bedside like there always is right after surgery, so I didn't go to see her until maybe 9:30. It was so hard to see my sweet girl on ECMO AGAIN!! I have to admit, I have been feeling kind of sorry for myself that I have to endure the trial of ECMO again. I kind of thought I learned all I needed to learn the first go around but apparently I was wrong. Gracie looked bad, like you would expect right after surgery. Her chest is open with the cannulas inserted into her heart coming out to the ECMO machine. She has chest tubes again, is on the breathing tube, has a cut down arterial line in her left wrist and looks overall like any of us would after 12 hours of you know what.

The transplant team called tonight and told me that the cross match of her antibodies came back negative. Meaning, she is NOT acutely rejecting her heart. They said this is good news in the sense that you never want them to reject the heart. The only way to know for sure is if you get a piece of heart tissue to test. They are still going to do plasma pherisis (where they separate the plasma out of the blood and put donor plasma into her) Plasma is the part of your blood where you carry the antibodies that would attack and reject the heart. They are going to do this as a precaution even though the tests came back negative.

After talking to everybody today, it is our feeling that we probably just got a bad donor heart. It did not look bad until they unclamped the lines. Dr. K. would not have put a heart in her that he did not think would be viable. They say that it doesn't happen very often but it can. And we all know that if there are some statistics out there where there is a 1% chance of something happening, Gracie is your gal! She likes a challenge.

We are in another wait and see what she does mode. Just like last time. Time will tell. The doctors and transplant team are not giving up on her and neither are we.

They may re-list her for re-transplant tomorrow, we are just going to see how she does overnight. She could be a candidate for the berlin heart but it is too soon to really say what we are going to with her.

Oh Gracie, I can't believe you are taking the hardest road possible, AGAIN. There are hundreds of people pulling for you who love you. We don't want you to be in pain anymore. Please recover quickly. Please tell us if you want to stay on earth with us. We would be so privileged if you do. We will listen to you like we listened to you before. You and Heavenly Father have a lot to think about. We love you so much. Your brothers and sister will be devastated if you go. Sleep well my little one, may the most precious guardian angels watch over you tonight. I will see you in the morning.