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Living with MRSA

“Wash your hands all you want.  Don’t touch things. Clean your cuts and grazes. Be careful all you can… but it won’t make any difference. An open wound will grow; it will cause rashes on your body and your skin to blister and weep. Once it’s in your blood stream, it goes wild, living in there like an uninvited guest crashing your dinner party.

It smells. I can smell it a mile away. Doctors laugh at you, but it definitely has its own smell. It stinks and to get rid of it, to try and get it to leave you completely, is like being entrenched in a war where no matter how hard you try the other side is always tougher.

I spit the words when I say them as it has haunted my life and my family’s life for so long. It enveloped my every waking moment, and every sleepless night, as I wished moment after moment it had never come into our lives.

It’s MRSA, a form of staph bug – a superbug which has nothing I deem “super” about it. To me, super is like a “super hero”, but the only hero when it comes to MRSA is those who battle it or those who are trying to cure it.

My little girl lived in hospital a long time battling gastrointestinal failure and the complications that accompany it. We were definitely no strangers to infections, spending weeks on end on all order of antibiotics for every different thing over years and years. That was my biggest worry then, and now. People used to say MRSA, MSBL, C.diff, and I used to just switch off; my child didn’t have them, so it didn’t matter.

Then one day, while she battled a burst gall bladder and just wouldn’t show signs of improvements as she had infection after infection, a doctor came into the room, gowned, gloved, and masked and said she has MRSA in her blood stream and it’s growing in her line and tubes.

Oh shit, I said. That’s all I said. I still didn’t register how much it would affect our lives.

We lived in the hospital and were always around and about, playing with nurses, in the play room; anything to pass the time. Now, once she recovered from the gall bladder incident, we couldn’t play; she still grew MRSA. Too many lines and tubes. No more playing with other children in hospital. No more playroom. We were stuck – isolated with a bug that was growing more resistant by the day and scared of spreading it around. And, of course, following strict hospital protocol around such bugs.

But, reality was, that’s nothing compared to the impact it had on my child physically. No longer are you just battling a medical condition but a serious infection on top. It rules your life and all the choices you make.

It leaks and oozes. Then you change a dressing and after multiple changes it then gets raw and oozy.  Years of constant infections followed, and traumatic moments that I won’t relive here.

You think with an infection that doctors just get an antibiotic and treat it. If that doesn’t work, they will have another. The thing about a bug like this is you can get to the end of antibiotics, and those IVs take longer and longer before a solution is found. Within a week, after more and more attempts, it then doesn’t work at all. The bug lays dormant then sneaks up and flares up when you least expect it. One day nothing. Then you look the next day and see the familiar pale yellow ooze leaking out from a line and your heart sinks. You know it will get worse before it gets better.

The other thing people don’t get is the toll endless antibiotics takes on a body: thrush, reactions, tummy pain, puffiness, blowing lines. Endless and yet unavoidable. The constant fear of what next eats away at you as well as the constant worry about treatments not working.  Even short term IV lines grew MRSA as we lost line after line and our vein access went from minimal to pretty much nothing.

The thing is, it’s a bug, you catch it. That brings a whole different sort of grief and anger compared to a condition you are born with or develop. Anger ruled my life. When MRSA flared up, I was often so scared as the violent convulsions from temperatures would take hold from another infection in the line. It had to be someone’s fault. I found people to blame and, to an element, I still do. But it’s nothing compared to the guilt and blame you place on yourself. As a mother, I should protect my children – the most precious things in my life.

Yet, while in my care, my child contracted a bug that was ravishing her poor little body. Did I not wash my hands enough? Did I not watch procedures close enough? Should she have sat on the ground when she did? So many stupid questions. When I’m not exhausted, and as life moves on, I know it’s a bug that’s everywhere. The longer you are in hospital, the more immune-suppressed you are, or just pot luck, you’re likely to contract a superbug.  I just wish it hadn’t grown on my child. I wish it didn’t exist at all.

We don’t have a line now. The last growth of MRSA was followed by thrush in her blood stream and it meant the final access was to be removed. Reality is, any line is going to be an area likely to grow this bug.

The not sleeping at night as you check continuously for a line infection; the constant changing of painful dressing; the fear that this could be in her blood (and not picked up earlier) all dulled, as the risk is so much lower. But, unfortunately, it still rears its head, but in more fiddly ways. A skinned knee ends up more manky, the longed-for pierced ears mucky and taking longer to heal. It’s a relief to sleep easier at night but also a battle to keep a child with gut failure line-free.

Something good I realised, just the other day, was how improved her quality of life has become now that she hasn’t got a line oozing MRSA continuously. That bug took such a toll on her body that she was bloated and puffy from constant meds.

It’s been a really big and cruel lesson to learn how important the research being done to treat and cure Staph bugs is. It’s something you just wish no one had to deal with. It’s something I wish my family never had to deal with.

We need to find a cure.”

– Tiff Mitchell, Eva’s mum, blog post shared via InfectedNZ