This Christmas, CF meant only one thing: Courageous Fighter

I had my next post all planned in my head. It was to come hot on the heels of Eva’s second birthday in mid December, and it was going to be a celebration of her two years of CF butt-kicking, hospital-free, in-your-face, loving-life existence. But she had this lingering cough which in turn made my fingers linger. I’d had her checked out a couple of times and been told that everything was fine, but I was reluctant to put the post out and put the mockers on ourselves.

I first had her cough checked on the 11th December as a precaution, firmly believing she was OK, which the doctor confirmed. On the 19th, the cough started to sound a little fruity so I got it checked again when I got home from work. She had a slight wheeze and an inflamed throat so the doc gave a course of steroids and an antibiotic ‘to stop it going South’. I kept in contact with her team in Temple Street and they were happy with the plan. By the 23rd she started going off her food. Now I was worried. My girl has her Mammy’s appetite and we don’t stop eating for just any old illness! I rang her team and explained that I didn’t like where it was all going. They reviewed her the morning of Christmas Eve and an X-Ray showed some shading on her previously perfect lungs. I was devastated but they assured me it wasn’t too bad and to follow a hefty schedule of nebs, steroids and oral antibiotics over Christmas.

Eva spent Christmas chained to the nebuliser and there was one thing I was sure of – the antibiotics weren’t doing a damn thing. But what did that mean? A virus that just had to run its course? Or a nasty antibiotic-resistant bacteria taking up residence? (Antibiotics are a necessary evil in CF, often used even with a viral illness to try and ward off a secondary infection. It’s not the same as a regular person stupidly taking antibiotics every time they’re under the weather!)

Eva perked up the evening of Stephen’s Day and we breathed a sigh of relief. She sat up at the table with a gang of us with her knife and fork eating a second dinner of chips after a feed of stew. She was dancing, messing, performing – my girl was back! But when she went to bed it all blew up. She just couldn’t stop coughing, her temp started to climb and her sats (oxygen saturation) started to drop. Wrong direction-ville. Next stop: A&E.

In A&E her sats hovered around 92 (the lowest they can be before hospitalisation really). Her breathing was laboured, but not consistently, and I think because she was sitting there munching rice cakes, they thought she’d be OK and sent her home. I have to say in future, at this point, I’d refuse to go home. Her form was deceptive, but I knew she wasn’t right. By 5.30 the next morning she was on fire and her breathing was so laboured, it was petrifying.

We took her back to A&E and her sats were down in the 80s. She went on a rapid decline and was put straight on to oxygen. As the hours ticked by her oxygen dependency grew. Every time she pushed the mask away her sats would drop lower and lower, and the litres per minute at the wall went up and up. The put in a feeding tube and IV line and admitted her – our Eva was but a shadow of herself in the space of a few hours.

I spent the night following her face around with the oxygen mask because sick as she was, she wasn’t letting the elastic around her face! But the alarm going off on her sats monitor every five mins had me beside myself. To go from defying the health odds to unable to breathe was impossible to comprehend.

The next morning it was finally Monday and her team were back in work (their short 4-day Christmas was the longest four days of my life). Her wonderful consultant Fiona came to see her and expressed concern over how much oxygen she was needing. Thankfully I had left to see Danny and sleep for a few hours when they repeated the X-Ray and mentioned two dreaded words to my husband – pneumonia and ICU.

Thankfully, Eva managed to avoid ICU thanks to a clever machine they put her on called Air Vo. It basically pushed humidified air into her lungs to help her breathe and to help open up her airways through constant pressure – even when she exhaled, the tubes were pushing 15 litres of air in every minute (90% of which was oxygen).

The rest is a blur – my husband and I doing 12 hour shifts each at the hospital, hoping and praying that she’d turn the corner, a corner that was oh so slow to appear. Eva had stopped speaking. If she sat up in the bed for more than 5 minutes, her eyes would roll in her head and she’d have to lie down again. She had developed this strange coping sound, an extended ahemmmmmmmmmm, which she used to self soothe through the constant canulas and physio. One doctor said to us  that her coping sound was a clever one, as the vibrations from her heartbreaking hum would be helping to open her airways. Clever little sick bunny.

When nothing was improving, they changed her IV antibiotic to a stronger one while we waited for the results of her sputum swabs (5 working days, in other words FOREVER). Her bacterial swabs actually came back clear (although they’re not totally reliable – you might only cough up what’s at the top of your lungs) but her viral swabs confirmed she tested positive for a nasty virus called RSV (Ruthless & Shitty Virus, as I like to call it). This at least in some way explained things – she was a little under with a cough already then got hit with RSV which led to bronchiolitis (where the small airways fill with mucus reducing air entry – add that to CF lungs which have extra mucus anyway and it’s a bug party down there) which led to pneumonia.

When she finally started turning that corner, glimpses of our crazy curly girl started appearing. She’d make me hold every sore bit with my hands – her toe that the sats probe was on, her elbow where the plaster over the cannula had caused an allergic reaction, her hand from one cannula, her other hand from another, her other elbow from a failed PICC line insertion, her bruised feet from bloods and cannulas – clearly I hadn’t nearly enough hands! She slowly started to talk – mostly ‘my very sore’ and ‘my want to sit on your knee’. But God were we delighted to hear that hoarse little voice. She never stops talking and it felt like we’d never hear her cheeky chat again. As the days went on the got more sparky – ‘my want chips’, ‘my want ‘moothie’ (smoothie) and ‘my want George’ (the Curious One) – all better indicators than any tests that her little body was finally winning the war.

She’s home now after 12 days in Hotel Temple Street. She’s still chained to the nebuliser, but she’s on her feet and rosy cheeked; demanding second bowls of stew and second episodes of George; insisting on going to bed with a sun hat on; ringing people on her hammer to tell them ‘oh no, I’ve lost my boat’; requesting baths at regular intervals and generally ordering the three of us about like only Eva can.

All I can say from the experience is that I’ve never known sadness like seeing my child with tubes up her nose and IVs anywhere they could get a vein. I’ve never know fear like seeing her sats plummet to the 70s when they changed her nose prongs and she was without oxygen for 30 seconds at most. I’ve never know despair like holding her down for bloods and ng tubes that she kept pulling out, knowing she was thinking ‘why aren’t you protecting me?’. I’ve never known helplessness like seeing her have diarrhea every time she coughed. But I’ve also never known pride like seeing her fight her way out of this. I’ve never known admiration like seeing her pull open her vest so the doctor could check her chest. I’ve never known amazement like seeing her explain that the probe on her toe put the numbers on the screen and the tube put milk in her tummy. And I’ve never known love like seeing a vulnerable little girl make all who cross her path light up with her crazy, determined ways. Eva, you’re the ultimate tonic.