Monday, May 12, 2014

#Ineedanewhashtag

I'm not even sure how to start this. 

Everything we knew is wrong. 

We got her autopsy results today. I am in shock. I am just in shock. She didn't die from Influenza A. 

"The cause of death is community-accquired methicillin-resistant Staphylococcus aureus (CA-MRSA) bronchopneumonia. CA-MRSA is usually associated with skin or soft tissue infections, though is a growing cause of pediatric pneumonia. CA-MRSA pneumonia is more commonly seen in children, often follows influenza or influenza-like illness, and is often severe with a mortality rate of up to 40% (more than half of deaths occur within two days of hospital admission). The source of CA-MRSA is often unknown, even after careful history taking.

While the rapid test at the local hospital was positive for Influenza A, viral culture and PCR studies were negative for Influenza A and other common respiratory viruses. Rapid tests are screening with sensitivities of 50-70% and specificities of 90-95%. When flu prevalence is high, false positives are in the 2-3% range. In this case the rapid test in likely to have been a false positive. Still, it is known that rapid tests can detect dead viral particles making it possible that this infant had a resolving influenza A infection that then did not grow in culture. However, the negative PCR test makes this less likely. As CA-MRSA pneumonia often follows a flu-like illness, this infant may have been infected by a virus not detected by the usual respiratory panels, such as rhinovirus."

Let that sink in for a minute.

Digest that. 

Ok, lets discuss. First off, what the fuck. How in the flying fuck did this happen? What this is saying, is that the tiny insignificant cough/stuffy nose that she had 4 days prior to her death was some sort of virus, most likely not Influenza A, but maybe possibly Influenza A, or rhinovirus or some other virus. This virus compromised her immune system enough that she touched/breathed in MRSA and it went crazy and destroyed her little lungs. What this is saying is that any of us can get a common cold, or influenza A, and we can kick it in the ass, but then we could die from CA-MRSA bronchopneumonia. I have googled (obviously) this. Everything says this normally occurs in young patients after influenza or influenza-like illnesses. And, without a high level of suspicion it is very likely to be missed. So, since the rapid test for Influenza A was positive, this infection never crossed anyone's mind. Everyone just assumed it was the flu. This makes so much more sense. I never really understood how it could go so fast. Lung hemorrhage can happen with Influenza A, but it is rare. Her lungs hemorrhaged and had abscesses and necrosis from MRSA. But, how could they have known that? It all happened too fast. Just too fast for her little body. 

My initial reaction was shock. Confusion. Anger. How could this have been missed? How could they have treated my daughter for something she didn't have, and let her die? How did this happen? Then the farther we got in the conversation, the more I realized it wouldn't have mattered. I will never know for sure, but I truly think that even if they would have known immediately that it was CA-MRSA, and started administering antibiotics, she still would have died. Maybe she would have lived for a couple more miserable days. Given the choice I would rather her die after 20 hours then 2 days. She would have been miserable and in so so much pain. She would have been terrified and confused. And, then most likely she would have died anyways. I will never know this for sure, but I have to tell myself this. And, from what I witnessed and the speed that it all happened, I doubt the antibiotics would have even had a chance to work before her lungs hemorrhaged. It was overwhelming and catastrophic and I don't think anything could have changed the outcome. 

I have the report next to me. It tells me everything about her. Her thighs were 24.2 cm, which is 9.5 inches. That's such a fat baby thigh. Her ears were 4.4 cm and 4.5 cm. She was 63.5cm long, 25 inches. 25 inches of perfect beautiful baby. The second paragraph of the report starts "Autopsy showed a well-developed and well-nourished female infant." Well-nourished is the professional way of saying "fat baby." She was such a fat baby.

I'm glad we know. I am glad Rich had the sense to agree to an autopsy. I probably would have said no, since we knew it was Influenza A. I am so glad they did this. But, am I? Am I glad that I know what killed my beautiful baby? I don't think glad is in the vocabulary of a grieving mother. But, I think it was a good decision to have the autopsy done. It doesn't change anything, but it changes everything. 

Right as I finished that paragraph "Your Song" started. Thank you baby girl, for being with me. I need you tonight. This is all too much. I haven't even started to process all of this. I don't know how to feel. Who to blame. What to do. What is there to do, other than be sad? It doesn't make this any better to know what killed you. It doesn't make this any easier, if anything it's harder. This is such a fluke thing. Such bad luck. I have never heard of anything like this happening before today. I have heard of the flu killing people, I have heard of people in hospitals getting MRSA. But, a healthy growing 5 month old baby gets a virus and then CA-MRSA invades and kills her. I am so sorry this happened to you sweetheart. I am just so sorry. I miss you so much that sometimes I don't know how I will go on. And, sometimes I just have to shove it all deep deep down. Know that even when I shove it down, I still think of you. I still miss you. Shoving it down doesn't mean I love you any less, it just means that I can only take so much of the all encompassing grief before I have to shove it down so that I can take care of our Lyvi-Loo. And, really, I can only take so much before I am absolutely certain it will kill me. I love you so much my sweet well-nourished baby. So much. I miss you. Wait for me, let's go to the stars. 

5 comments:

  1. Michelle, I came across your blog by chance and although i don't know you, it has changed my life. I am so angry that this could happen to such a loving, wonderful mother like you when there are women out there that let their children starve and live in filth. Ugh! It just disgusts me. I want to thank you for sharing your story and Violet with the world. She truly is just a beautiful baby. I love looking at the pictures that clearly show that her time here was filled with joy and love. I want you to know that you aren't alone, that I am repeating your story and telling people about Violet. Thank you so very much for being brave enough to do this. For showing me that even though I'm a single mom and I struggle everyday with work, money, house etc. None of that matters. At all. Thank you for reminding me to hug my daughter just one more time, to tell her I love her as much as I can, to sneak in her room and watch her sleep, and to treasure every moment because you just never know. Thank you. My thoughts are with you and your family, and most certainly the beautiful Miss Violet, whose memory I intend to keep alive by telling your story.

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  2. A friend was in your due date club and I found my way here. I am weeping for you, I am furious for you, I am beyond words. This is unfathomable and absolutely the most hideous thing I can imagine. I am holding you and your sweet Violet in my heart.

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  3. I don't even know u yet my heart aches n yearns for you!!

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  4. i came across your story through a comment you left on Ryan Cruz's IG picture. I just want you to know that you will always be in my prayers and after much consideration you have made me re-think the flu shot ordeal as I have never allowed my son to get one.... But I'm truly sorry for your pain and You will always be in my heart.

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