Monday, October 28, 2013

I guess it can stike twice - The story of my daughter's battle

This is the second part of my childrens' story. 

My daughter was born with a shock of red hair just like her brother. But unlike my son, she was small, strong and full of attitude. Seems strange to pin that on a newborn baby but man she could caterwaul. She was a good feeder, a relatively good sleeper and pretty much did all the things a baby should do, all with a pack-a-punch kind of view on life. 

When she hit four weeks my husband and I started watching her for signs that she'd inherited my sons disorder (See here for details) And she was a bit chucky but nothing like the magnificent pyro technics our first had managed to perform. We sighed in relief and shoved our worries aside. She wasn't going to get sick like our son. We weren't going to have to go through that again. No one's that unlucky, right? What I've now realised is luck has nothing to do with it. Our lives were just one of many, turning in circles, jumping over obstacles and hoping for the best. 

She was the perfect little eight month old. Chubby, a red, rock star hairstyle, the cheekiest grin on the planet. But somewhere around that time, we started to notice things weren't quite right. We had just returned from a trip to Sydney to visit friends and had decided to have dinner with my parents in their newly finished beachhouse. My son was staying with the other grandparents and fish and chips sounded too good to pass up. 

Sitting on the fresh leather couch my mum put her hand to my daughter's forehead and said, "She's awfully warm. Has she been out in the sun today? She looks burnt." 
I looked down at the sleeping baby in my arms, her face a rough shade of beetroot, and shook my head, "No." Eyeing her suspicously, her tiny legs wrapped in rainbow striped tights, "Maybe she has a fever..." I remember thinking, it's probably teething, ear ache, something normal, something I understand and can handle. 

We took her home and she went straight to sleep. But she woke in the night, screaming her head off. Our tin shed of a home was vibrating from the noise. The problems was, the things we usually did to settle her, like holding her and patting her to sleep seemed to make her scream more. And this wasn't just crying. This was screaming bloody murder in pain. 

"It's weird," my husband said, "she seems to scream more when I hold her in my left arm than in my right..." 
I nodded, my eyes drooping from severe sleep deprivation. "Yes, that is weird." I said mechanically as I squeezed the syringe of panadol through her rosebud lips. It made no difference. 

That was the first night of screaming. There were only two. Because that was all I could take. It was all I had in me. What do you do when your child screams all night and smiles all day? I started to worry that it was because I'd painted her room bright orange and somehow it had made her angry. She'd had the fever a few nights ago but now there was no fever just the screaming. I was confused and beside myself from tiredness. 

I...just...wanted...it...to...stop. 

On the third day, after another night of screaming, we played on the lawn, me sitting in a patch of sunlight hoping the vitamin D would wake me up a little. Her big brother blew bubbles and ran around popping them in delight. She watched him with that cheeky grin, sitting in my crossed legs on a blanket. We started to play the game we always played, where I supported her as she pushed her legs up from the ground to standing. I held her up, expecting the joyful spring of two feet pushing up. One leg pushed to standing, the other one dangled like she was afriad to put it down. Before my son, I would have thought, 'oh that's odd' and not thought much of it, but even though my tired brain was having trouble focusing on anything, that leg just dangling there was flashing in my mind like a massive warning light. 

Something was wrong. 

I scooped up my son, strapped them both into their carseats and drove like a hyped up zombie to the doctors surgery. I showed the doctor what my daughter was doing, she scratched her chin and said that we best get it checked out at the hospital because it could be a viral hip problem. She said it wasn't too serious. Relieved, I followed her advice, calling my husband to tell him to meet me there. 

Having studied pathology was a blessing and a burden. Because when I heard the words "CRP through the roof" I knew exactly what they meant. My husband knew it wasn't good but he didn't understand that it meant my daughter was fighting off a serious infection. When they called in their orthopedic surgeon, we both knew that as soon as he opened his mouth our world was going to change. He uttered the words, "septic." And my focus became fuzzy. Noises pressed in and around me and I gripped my husbands arm. He heard it but he didbn't know how bad that was. And I didn't tell him. How do you tell your husband that for the second time, one of his babies might die, or that she could lose her leg? The worst thing was looking down at her reddened face and knowing just how much pain she must have been in. The thought, 'not again', floated in and out, because there was no point in dwelling, in saying 'why me?' this was happening right now and we needed to help her. 

Surgery was the only option. They would syringe the septic fluid from her leg and treat her with antibiotics. They would hope and pray they got it all. The clapped up the side of her metal cot and wheeled her away and I thought, 'I can't believe I'm doing this again. I don't want to say goodbye to my baby." 

We were in a ward three days after the surgery. She seemed to be doing well. 'She was lucky' they said, the sepsis was very well-contained in her ankle joint and they thought they had got it all. We nicknamed her Club Arm. She was attached to an IV all the time, which is not what an eight month old wants and she tried to pull it out several times. So they attached a splint and several metres of bandage to keep it in. 

I lived in the hospital while she was being treated, but one morning I chanced sneaking out to the cafeteria to get some breakfast. The phone rang shrilly or maybe that's just how it felt. It was a number I didn't recognise. The calm, monotone person on the other end told me that my daughter had Meningococcal disease. I left my half-eaten food on the grey plastic table and raced back to the ward. Where was she? The space where my daughters bed should be was empty. 

Not even panic covered how I felt. Everyone had heard of the disease. It killed babies. It showed up as an angry, purple rash and if you didn't die you usually lost your limbs. It was a nightmare. 

They'd taken her to quarrantine, we would all be in isolation until her treatment was over. I was shown to her room down a series of identical corridors until we reached a place where all the door were thick glass and cheery yellow signs were plastered on the fronts reading, 'face masks required' and 'please wash hands upon leaving.' She was sitting up in her metal cot, holding onto a bar with one hand and bashing the others with her club arm. She smiled when she saw me, two pearly teeth in a gappy grin. I picked her up, sat in the nursing chair with her and cried and cried until I was gasping and hicuping from it. The nurse watched me over her facemask. It was all too much, the face masks, the gloves and gowns. I glared back at her through red-rimmed eyes, "Get the doctor in here to explain to me what's going on." She turned and left the room. 

When the door opened again, it was the orthopedic surgeon. He had the flimsy white mask on as well. He laughed and said that he looked like a duck. I felt the air release a little, the pressure and worry starting to ease. He said she was going to live. We were lucky that we brought her in so early and lucky that the disease was so unusually contained within her ankle. Her immune system had some work to do but with antibiotics for the next three months she should make a full recovery. 

'Full recovery', 'live', 'lucky' these were good words. I clutched at them and held on to them tightly to show my husband and my family. 

We did have to take antibiotics that made us cry red tears and pee bright orange. And we had to do in-depth interviews with the CDC to track where she may have caught it from. Somewhere in Sydney, it seemed. We were even on the news. But eventually we got to take her home. 

My daughter is now six years old and she still has that fiery attitude, maybe because of how much she's been through or maybe she's always been that way and it's why she survived in the first place. I suspect the latter. She has had some setbacks, mostly because her immune system was so shot after her illness that she continually got sick. She has asthma. She also has a hearing impairment, and a funky purple hearing aid which she loves. But she's good, she's awesome, she's the toughest kid I know. 

I can't be sorry for what happened, I can't say 'why me?' and lament my bad luck because she's alive, she's amazing. And the rest, well, it makes a good story and I'll never forget it. I can only be thankful for how it turned out and my heart breaks for all those parents out there who weren't as fortunate as I was.