This last surgery had complications and required additional surgery and a hellish recovery. I've been in extreme, debilitating pain. I wasn't able to walk, move around, go the gym, go to the store, ANYTHING for a month. It was horrible, especially for someone whose heart is 90% running, 10% everything else. (kidding) But really, I'm not myself when I can't run and to not even be able to walk has been depressing beyond belief. I've been down. Lonely. Feeling a little sorry for myself.
Maybe a little too sorry for myself, because God stepped in and refocused me. Just when I thought nothing could possibly be worse than what I went through, I learned about 2 year old Frankie.
A nurse who I met through the National Necrotizing Fasciitis Foundation (there aren't many of us, so we all get to know each other) invited me into a closed Facebook group for survivors of necrotizing fasciitis. And boy, I've gone through a gamut of emotions since joining this group. It's basically a forum where survivors of nec fasc and their families can share their journeys, vent their frustrations, fears, and heartbreaks, and celebrate their successes. As I started to read through the journeys of others who have walked this strange and horrific path, I cried my heart out. Finally I had found a group of people who understood this nightmare. There aren't many of us. Less than 300 and that includes family members. Still, hearing that others shared the sleepless nights, the horrific pain, the sadness of losing skin, muscle, limbs....losing what our bodies once were...the PTSD, the nightmares, the losses....it gave me hope. It made me realize that I can too be brave enough to fight this fight and come out on the other side.
I came across the journey of Frankie. Frankie was only a little over one year old when he was diagnosed with nec fasc. Even thinking about it breaks me. How can a baby be subjected to this nightmare? It isn't fair. This isn't a disease that you have and then one day move on from. If you survive at all, your health is changed forever. You likely are missing limbs, organs, large areas of limbs. The surgeries beyond painful as the surgeons' only way to save the patient is to remove the tissue affected by the infection, which is generally skin, fascia, and muscle, and when it goes too far, the entire leg or arm. How in the hell a baby could get this made me side-eye God at first, to be honest. I don't have the answers. I know that God doesn't GIVE us these nightmares. He loves us. It hurts Him to SEE US HURT. They happen as a result of us being humans and this being Earth. We aren't in Heaven. These things won't happen there, and that is a beautiful and hopeful thing. All we can do is trust that the things that happen on Earth are part of HIS GREATER PLAN. That is really freaking hard to come to terms with. My BIG happened for a reason. It's part of a BIGGER plan that I rarely understand, although as I've fought my way through recovery, I sometimes get glimpses of understanding. I know that we are here on Earth to practice loving each other so we know how to be more like God. And how to love in Heaven. And we're here to take care of each other. Walk beside each other. And maybe I wouldn't have learned those lessons without going through this. I can't speak for Frankie or any other baby who undeservingly goes through something like this. All I can do is pray and trust and do what I can to love Frankie and his brave mama and his family. Walk beside them. Like so many have walked beside me.
Frankie lives in the UK. He was a normal, beautiful, blonde-haired, blue-eyed, healthy toddler when he developed nec fasc. Last April, Frankie developed a high fever one day and wasn't acting like himself. As his fever rose quickly to over 102 degrees, his mom Lucy became worried and took him into the hospital. As she brought him in, she noticed a small bump on his back that had started to become warm and red. When Frankie was admitted, he was already in organ failure and shock. Blood tests confirmed that Strep A (the bacteria that if aggravated can turn into nec fasc), and within hours, it spread all over his back, sides, part of his chest, and legs. The doctors believed that he developed the infection from a little cut on his forehead he'd gotten from bumping his head. They believe the bacteria somehow got into the cut and lay dormant for a few days and then started to spread and attack. Frankie's mom was told there was very little hope and that all affected skin, tissue, and muscle would have to be removed, and fast. If he survived at all, this baby would have large chunks of his body missing.
After a 9 hour surgery, Frankie was still alive, although a 7 inch by 9 inch section of his back was gone, parts of his shoulder, and sides. He was in a coma, his vital signs were still terrible, and there was still little chance of survival. Lucy was told that "Frankie is the sickest baby in the country, and the sickest baby the hospital has ever taken care of." How Lucy didn't fall apart and give up is beyond me. How my parents didn't fall apart and give up is beyond me too. How do you even get out of bed when something like this happens? Lucy and my mom have similar answers. You just do, they say. You would give your entire life to take the pain away from your child. Frankie's mom said that at one point, she whispered in his ear and told him that it was "okay to go." She'd rather him die than struggle in unimaginable pain. She'd die just to spare him a minute of the pain. You keep going, because God made you a mother, and the instinct just takes over. For my mom, she didn't stop praying.
My parents didn't fall apart when I was dying.... THEY FELL TO THEIR KNEES IN PRAYER.
Lucy says that she and her husband weren't at all religious before Frankie got sick. But when she was told her child would likely die if not lose most of his body, she realized there was nothing she could do except turn to God. Even in someone who isn't a Christ follower, there is a point in everyone's life where they you are faced with something that either will make you walk towards Jesus or walk away from Him. Lucy chose to walk TOWARDS Him.
God spared Frankie's life, much like he did mine. It took a few weeks in a coma for his tiny body to start to normalize again. He had to have several skin grafts over the next few months to cover all the wounds. If you remember my post about skin grafts, you remember that they are HELL ON EARTH. It is the most painful thing you can imagine. How a BABY goes through this, I cannot even comprehend. Frankie's warrior mama Lucy fought everyday with the pain doctors to manage Frank's pain. She was brave and didn't stop. Even when she knew life as she knew it was forever changed, she continued to walk forward.
She had an amazing support system. God put people around her that helped to her to be as brave and strong as she needed to be. THAT is why we need to take care of each other. We cannot get through these trials on our own, and we aren't supposed to. We aren't made that way.
Finally, FINALLY, Frankie went home. However, he was in a 24-hour pressure suit that would put pressure on his wounds in order to help them heal and prevent infection. His mom said the worst part was bathing him. He would scream in pain.
He was hospitalized again several times over the next few months for additional surgeries, one was a skin graft, and one was a staple that had gotten stuck in a wound and needed to be removed. All the while, He kept on fighting. He kept proving the doctors wrong.
Unfortunately, Frankie's story doesn't end there. His mother's worst nightmare came true a few weeks ago. To be continued in Part 2.
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