Burning skin and broken hearts

Last week started out like any other week, until it didn’t. Tuesday night Haven screamed in agonizing pain the entire night, she would tire herself out for a bit, we’d both fall back asleep and then the crying would start, again. Wednesday she struggled some at school, I noticed her face becoming red in odd spots, and her neck looked almost sun burned, it had been chilly out, there was no way it was a sun burn. I called the surgeon that treated her original Staph, he told me she was fine and they’d see me next week as scheduled. I sent a picture to my grandma and told her I thought something was wrong. That night was filled with more screaming, she kept saying her neck and side hurt. I knew it then, the staph was back. Thursday we woke up and Haven couldn’t move. I called our pediatrician who told us to come in immediately. I carried her stiff body to the couch, her screaming in pain the entire time. She wouldn’t let me touch her, she had on yesterday’s clothes and wouldn’t let me take them off. She was just in SO much pain. I hadn’t seen her in pain like that since her brain surgery. She has such an insanely high pain threshold I just knew something was really wrong. On the way to the hospital I text my mom saying “something is seriously wrong with Havey.” She called me immediately. She just knew too. I’ve said this before and I’ll say it again, follow your mothers intuition. Listen to that voice in your head. YOU know YOUR child. If I would have kept my baby home and waited until the next Tuesday to see the surgeon as he told me to do, she wouldn’t be here today.

That day and the days following were a whirlwind of living, breathing hell. We were admitted into the ICU, spent a few days there before being transferred to Riley’s via ems. Our amazing pediatrician did everything right, everything she could, she probably saved Havens life, but she was still getting worse by the day. Swelling everywhere and the redness was spreading like wildfire over her body. She was so lethargic and still in an immense amount of pain. Once we got to Riley’s we had a team of Infectious Disease, Dermatology, and Developmental peds all working together to figure out Havens diagnosis and treatment plan. It was such a feeling of relief when we started to get answers. I finally saw the light at the end of tunnel and felt like I could breath again.

Apparently I didn’t make it clear enough on my social media posts where I stated multiple times what Haven actually had. STAPH SCALDED SKIN. Caused by STAPH. IN HER BLOOD. It wasn’t treated properly before, she never received a complete dose of antibiotics. Her kidney and liver couldn’t properly filter out the toxins so as they seeped through her body and came to the surface, the toxins were burning her and killing her skin. Now all her skin is Falling off. You know what that staph in her blood was headed for next? SEPSIS. Let that sink in. We clear now? K good. While I’m at it, for the thousandth time your perfect self and perfect child WILL NOT GET STAPH FROM MY POOR BABY. Fack people. Educate yourself. Man it feels good to get that off my chest.

I know I kept everyone pretty updated through social media but there was so many moments I didn’t share. Moments I couldn’t put into words. Moments that bring me to tears to even think about. Moments where the pain was too intense to even begin to talk about it. Haven was sedated 3 times, each time I held her body while it went limp and tears streamed down her blank face. One of the times mucositis set in and I sat sobbing in her therapists arms while they repeatedly suctioned her out so she could breathe. I didn’t tell you about the EMS ride and the fear in the three of us while we rushed Haven three hours away, all while her fever spiked and they thought she was going into a state of hypothermia from the ketamine. Or how my mind traveled to a place I hate to go, wondering if I’d get to bring my baby back home after this. If she’d see her sister again. I didn’t tell you about the day a nurse at Riley’s and I finally got her out of bed after a week of bringing her a bed pan and lifting her body up onto it every time she had to pee. My mom watched in tears as Haven screamed and shook while we had to remove the rest of the heart monitors that were literally burning her skin and we tried to clean her peeling and burnt body as gently as we could. I didn’t share the moments when my best friends sat next to me during the dark and scary without fear of contamination from my sweet fragile baby. I didn’t share how my entire family on my mommas side rallied hard to do whatever they could for us or how my momma and uncle followed us down to Indy for fear they may not see Haven again. I also didn’t share some of the not nice and pure ignorant things people said to me, or how some people i thought were my people will never be my people again. You didn’t see Havens sensory overload meltdown the night we were leaving Riley’s, how she ripped her IV out of her foot and completely lost it, beating me while she screamed bloody murder. Or how I carried that screaming wailing child naked out of the hospital and into my car. I know I’ve chosen to make our lives and struggles public but remember… “You only see what I choose to show you.” And some of the things I choose not to show may break you, like it’s broken me.

In times like these I have struggled to see and understand God. It’s not fair for a baby to endure so much pain in such a short life, it’s hard to understand how there’s a higher power when life gets so scary. Although I struggled at times to see him, I surely felt him through all of you. We had literally thousands upon thousands of people praying for us. So many reached out, so many acts of kindness from friends and people we barely new, rather it was a coffee, a care package, or balloons for Haven. Everything big and small carried us through the week. I had a group of Matilda Jane loving women who I had never met in person until this week literally get me through. They fed me, bathed me, clothed me, were my backbone at Times, my shoulder and ear to cry on, and like so many of you did what they could to help lessen the financial burden from this month. I have an entire new group of friends that I now consider family, some that did more than my “real life friends and family. ” Because of many of you through my anger and fear I still saw God working all around us. I was wrapped in love, comfort, and Strength and we made it through the dark and scary. Havens still got some healing to to and we’ve all struggled to get back to normal but I got to bring my baby home, back to her sister, and for that I am so very grateful.

xoxo Taylor

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