We recieved a call from Emma’s school yesterday around noon. Her teacher said that she was “sittiing at her desk, non engaged, and her lips were blue”. I called Mark, called my parents to watch the kids, and went to pick her and Mark up. When we arrived at All Childrens in St. Pete, they did an Echocardiogram, which I can read. I asked the tech if what she was looking at was fluid around her heart, and she said that she couldnt tell me yes or no, but that was a “good educated guess”. I knew right then that there was something seriously wrong. When she left the room, she said that she couldnt tell us what she saw, but that she wouuld be calling the transplant team as soon as she left our room.
Emma had an x-ray, which the ER doctor said “Showed failure, compared to the last one on file”. Then the cardiologist came in and explained that Emma was indeed in heart failure, that they didnt know what caused it all of the sudden (she had a great report, one of her best, in Gainseville 2 weeks ago). His first impression is that she has a virus that is attacking her body (her liver is quite enlarged too). She has plueral effusion and fluid around her heart. They have her in IV steroids and will continue to do that until her echo’s are clear. They are starting her on Milrinone, which will help her heart pump better. She has to be slowly weaned off of this drug, and can’t leave the ICU on it. He asked our permission to start her on IVIG Therapy, which is an immunomodulator in that it balances the immune system, strengthening immune systems that are too weak and reducing activity in overactive immune systems. They are also doing viral cultures on her blood so that, if it is a virus, we can properly treat it before it causes the heart too much damage. My biggest fear whenever we go into the hospital is that she wont come out, or that her heart is so damaged that she requires another transplant. If that were to be the case, we would Bayflight her to Gainesville immediately, according to her Transplant Cardiologist up there. Luckily we arent quite there yet.
We are staying at the Ronald McDonald house, as we don’t know how long she will be in CV-ICU.
I don’t have it in me to type out requests, so please forgive me. Just pray for her, that the Lord would protect this heart and that we would make the right decisions regarding her care. We would prefer to be in Gainesville at Shands, but her transplant doctor up there doesnt think she is stable enough to handle the transport. I asked the Cardiologist here “On a scale from 1-10, how bad is she”. His answer was 7-8.
“For in the day of trouble He will hide me in His shelter; in the secret place of His tent He will hide me; He will set me high upon a rock.” -Psalm 27:5
Thanks for your prayers and support, they really mean so much to us.