I am a person that needs information, that needs statistics, that needs the cold hard truth, that needs it all in order to put the big picture in my head. I want to be as real as possible with the situation that Emerson is in and our family future. It is still crazy the situation that we are in.
The nurses that we have had bedside (right now Emerson has a nurse taking care of her 24/7) have been amazing. Most of them have kids on their own, so they feel you in your situation. They want to do anything to help, including talk with you.
In talking with the nurses, a few things I have found.
1. With how Emerson came into Loma Linda, they absolultey thought she would be on ECMO fast, and are “happy” with where she is at right now. This is one of the reasons they rushed so fast to get her listed as 1A on the heart transplant list.
2. There are only about 4-5 heart defects that actually need a heart transplant. Think about that. Modern medicine can do so much in terms of medically and surgically fixing the heart. But 4-5 circumstances lend itself to the only solution is heart transplant. Emerson finds herself in that position.
3. With that, I asked a nurse who has been here 14 years, how many cases they get like Emerson. She remembers in the last 2 years, there has only been 3. 3! Are you kidding me! And one of them was the fact that a baby got influenza, the heart swelled, they put the baby on ECMO to allow the heart to rest, and the baby recovered and was fine. Just think about those numbers people. Think about all the babies born each year. And Loma Linda is a well-known heart transplant hospital. Again, why us??
4. When we brought Emerson into the ER, many doctors won’t do heart x-rays, because you assume with a baby the heart will be okay and they will just give fluids and sent home. Our nurse told us that we had a good ER doctor to take a chest x-ray and to send us off to Sunrise and then to here. It is more common than not that chest x-ray on a baby her age won’t happen.
In talking with parents, whose daughter had a heart transplant last week at age 13, a few things I have found.
1. They are in a little bit situation as ours, and a different diagnosis, and they were able to treat their daughter with a few surgeries as she was growing, until finally having to get a heart transplant. They have been dealing with this for 13 years basically. But I asked them the emotion of getting the call that a heart was available, and it is a week later now, and the dad said he still can’t believe it. You just wait and wait and wait for that call to come, and when it does, it doesn’t seem real. Their daughter was listed as 1B on the transplant list for most of her life. Her heart got worse, and then was listed on 1A for 90 days before she got her heart. They are a nice couple who has kind of been talking to us and guiding us. They are hoping to go home by the end of the week. Their daughter was walking the hall last night for heart exercise, and she exclaimed to people “I got my heart!”. It was very adorable.
2. I asked them if they had any other kids. And the dad told me my same exact thoughts I have been having as well. He said that they couldn’t tell him that this wouldn’t happen again to them, and they just couldn’t put themselves, their family and their friends through this again. That would be way too much. I totally understand him, I get it, I am here, I know, and I pray daily for understanding and guidance from God about this.
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