So today, Jeff and I met with Dr. Rapkin & Dr. Petrillo at CHOA Egleston PICU. It was an hour long meeting. I am so thankful that they took the time to talk with us and answer all of our questions.
They began explaining all the testing that they did to confirm HLH (her rare blood disorder). I will not bore you with any medical terms. Basically, they found no cellular evidence that she had HLH. She had a genetic mutation with the MUNC gene, but that particular mutation has never been found before and therefore we don't know about how it affects her health, if at all. There are only a few mutations on the MUNC gene that they know of that are related to HLH cases. Being that her's was not a part of that and she had active and present NK cells, she did not have HLH at all. They found no infections present anywhere, except for her T9 vertebrae. We do not know why her abdomen was so distended, why the rash on her chest, why the difficulty breathing for so many months. All in all, her body showed clear signs of distress, she was in heart failure before she transferred to Egleston, but it improved while on ECMO. She was suffering from Multiple System Organ Failure. We may never know why Emmy's body couldn't keep fighting. I want to know the answers and I may not rest until I do find them. I want to know why???
Sweet Emmy fought such a good fight to the bitter end. She is my hero! I am still proud of everything you did and are doing even after you've gone to Heaven! We miss you terribly Baby Goose!
Video of Emmy...
http://www.flickr.com/photos/corriganfamily/3528821012/in/set-72157618003393631/
I'm so sorry that your meeting produced more answers than questions. How difficult to accept that you may never know. Close your eyes and feel her little arms hugging you.
ReplyDeleteI can't imagine what you, Jeff, and your family are going through at this moment, just when you thought to maybe have some closure. Emmy was a fighter, and you, Jeff, and the doctors did everything they could for her and she thanks you for that. Sweet Emmy will always hold a special place in my heart and maybe one day we will know what happened to her. Big hugs to you all!
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