Thursday, April 09, 2020

U-turn in A&E

Mumsnet have a famous thread called AIBU - Am I being unreasonable?

Yesterday, I asked myself - am I being too cautious? Did we just go to hospital...for nothing? 

Grab a chair and I'll tell you.

We are now in the process of tapering Tess' course of steroids, as prescribed. That means her body has to do without anti-inflammatory support. Steroids should only be used short term, if at all possible. 

For 2 nights she got wheezy and a bit breathless before bed. I phoned the GP and, like me, she didn't feel 100% confident that we had 'the full story,' and she supported my desire to have Tess's chest checked again.

The GP wondered if an X-ray might be useful, so we were advised to go to kids' A&E. In a pandemic, in case you hadn't noticed.  

Well, Glasgow NHS, I was impressed at your infection control measures. 

A male nurse in PPE (or at least the UK version of PPE) sat outside the sliding A&E doors with a walkie talkie. He intercepted us and made sure we weren't just walking in from the street know what. 

Inside, we sat alone in the waiting room before being checked by another nurse in full PPE (and elaborate tattoos - fair do's). 

We were offered surgical masks, 'to protect you and us' and we gladly tied them on. Tess' hairstyle looked inappropriately cute with the bows tied. 

Inside, the triage section, we sat behind a thin curtain, waiting our turn. I could hear the talk in other bed-bays. A wee girl had fallen and chipped her wrist bone (not, covid, phew!). A toddler boy was crying with some indeterminate malaise (no temperature - phew!)

Meanwhile, Tess continued to cough like a TB patient from a Victorian work house and I wondered what the other patients thought of us.

After what seemed like ages, but was actually 45 minutes, a young female doctor in scrubs and PPE examined Tess and asked various questions. She stood well back, and looked like she was practising keeping her distance, if not for us, then certainly for future cases.

She said an X-ray would only be suitable in cases of suspected pneumonia, and Tess didn't have that.  Not that I thought she did. I guess I just wanted to make sure we weren't missing anything, and yes it is so hard when your child seems stuck in a pattern of chronic illness. 

So we drove home and put all our clothes in the washing machine and I let my expectations settle a bit and I resolved to try to 'let more time pass'. 

Tess was asleep after 10pm and I felt my shoulders drop, just in time to switch on the horror show that is the nightly news. I don't linger there, I just need to know the headlines.

Then I watched my brother's out-there documentary about Scotland's history of swearing. If the word 'jobby' offends you, you'd best keep away. Otherwise, knock yourself out. 

Thursday, April 02, 2020

Everybody Hurts, Sometimes.

Imagine if your child was coughing about 200 times a day. Not wee, pesky coughs, but big wracking barks, reaching for air, like a crocodile snapping at flies. Imagine if it had been going on (albeit varying) for 75 days, and you were in lockdown.

Oh, that's us. Well, friends, things got worse before here.

Two night ago, I thought Tess was having an asthma attack. Dire. I gave her the emergency treatment of Predisolone (steroid tablets). It was horrible and scary. I could feel my kneecaps physically shaking, as if they were fried eggs, sliding up and down. 

 I chased medical help. GP was very keen to contact our NHS hospital consultant directly by phone, as opposed to Tess going to hospital and 'risking exposure.' 

When the consultant finally called (every minute seemed an hour, as I waited), he took details and patiently came to the theory that she has a 'post infectious cough.' 

Wise, he said, that GP tested for Whooping Cough earlier - it wasn't that, but there may be 'many bugs' that can do similar things. Cousins of whooping cough! Come on in, guys, it's a party.

Now for the kicker: there is no treatment. Yes, we can try the brutal oral steroids (many side effects) and he even suggested 2 weeks of them - just to prove to himself, that they won't help, and then he will know it is the Post Infectious cough as opposed to an asthma flare. Like drowning witches. Damned if you drown, a witch if you swim. 

(By the way, we've already tried anti-biotics to no effect, and every bit of over-the-counter 'throat-soothing' snake oil I could find).

HOW LONG WILL IT LAST? I asked, (in capitals in my head). Politely, in real life.

He wouldn't be pushed on time frame. Not a jot. Wise man. He mentioned other kids who had it - I distinctly heard him say, 'for years'. 

I tried to block that bit out. He tried to encourage me that it will eventually resolve with time. Please, please, please. 

So here we are, in a pandemic, taking steroid drugs that lower immunity, just to prove they won't help, coughing 200 times a day, having fun. Tick!

Don't get me wrong. The NHS dedication is amazing and always gives me a lump in my throat, or makes me cry.

Obviously, I will watch Tess and monitor her closely.

If there's any one out there, whose asthma kid has finally got over a serious, crippling cough lasting months, feel free to send positive stories. 

And I know, I know, there are so many scary stories out there just now, re Covid19 and the global 'war' we are all fighting. Many people are in much worse situations. My heart goes out....

I'll be back on Twitter later, retweeting the true experts and the WHO advice, as opposed to the Herd immunity barbarism that Britain started with. Keep on keeping on, my friends. 

Tuesday, March 31, 2020

The Trembling Kind

I don't know what else to do, so I will just write. 

I sit beside Tess, who is painting a kitchen roll tube as part of 'lockdown' home-school work. She is coughing regularly, in big exasperated barks. 

To recap, she has asthma, and has currently been coughing (big style) for 75 days in a row. In the middle of a nightmarish, coughing Pandemic- just to be cheeky.  Just to help her mother's nerves. But yes, it is not Covid19; it is Cough-Variant Asthma, I remind myself 20 times a day. 

Yesterday, on GP advice, we started the new inhaler - Symbicort. As I lay in bed with her, trying to help her to sleep through the now-nightly coughing fits, I noticed she was trembling. I went to re-read the leaflet for Symbicort and yep, number 1 side effect - trembling or shaking. Fab! I hope it settles.

Earlier in this Pandemic Crisis, I was constantly checking the news feed of the outside world. For the past few days, I've been consumed with the inside world. I've tried not to scroll the phone.

Here's the toilet roll tube, now re-purposed as a cherry blossom tree. The trembling kind.

Sunday, March 29, 2020

It must be Sunday

This is me since yesterday, said Billy Connolly once.  

Hour by hour, I still feel like a rabbit in the headlights. 

The anti- biotics aren't helping Tess at all. They were a gamble, one option, in the absence of other possible treatments. 

I have a dear friend who is a GP, (and a superhero, even when she had a 1980's perm). I called her for advice last night when poor Tess was doubled over coughing. Yet again. 

If the anti-biotics are too painful on her stomach, my doc pal said we can cease trying them. They just didn't seem to be helping one millimetre.  

I like it when doctors consult. Ask the patient's opinion. Advise and support without dictating. My friend is an expert at that. 

Plan B is to try a new, stronger asthma inhaler. The prescription won't reach Boots until Monday and there are rumours of 5 day delays for regular meds. But I plan to run the gauntlet tomorrow and try and hunt it down. Maybe take it to a smaller, local chemist. 

These are long, slow days, when I'm acutely aware that there must be so, so many people who are suffering. It's as if it's hanging in the air. 

The Spring sunshine and the wood pigeon's song (3 notes on a wee wooden flute) carry on like they have enough to do, without humanity's troubles to hold them back.  

I love my family. I'm telling them more often. 

Friday, March 27, 2020

The 70 Days (and counting) Cough

My 10 year old girl has been coughing for 70 days.

It's hard to be stoic about it. Mums worry. My heart sinks often. On impulse, I picked up the phone to the GP surgery to enquire about our situation. They said to bring Tess in for a check up.

Instead of going to the waiting room, I was to phone from the car. They ushered us in through the automatic doors, to a room newly labelled, the Respiratory Room. God. 

The GP, who normally wears lovely Boden-style dresses, was in blue scrubs, surgical gloves, a plastic apron, goggles and a flimsy paper mask. My heart went out to her. 

Tess sat on a slice of tissue paper, placed on a seat. I stood, trying to touch absolutely nothing.

GP agreed that Tess' cough had been going on too long. She sounded Tess's chest (cautiously, on her slender back) and said that while the chest sounded clear, we really needed to try something.

We have anti-biotics in the fridge at home, previously prescribed and body-swerved when Tess had improved without them (only to relapse later). You can try them, now, said the doctor. They might help or they might do 'absolutely nothing'.

Next stage would be to upgrade her asthma meds to a combination inhaler. She warned me to phone Boots the Chemist before going. 

Ideally, I'd like a Hazmat suit before going, but damn it, wouldn't the entire NHS? Don't get me started on my level of rage about that failure of Government. 

It's such a stressful time, I said to the lovely GP and thanked her.

People are dropping like flies, she said.  Staff, patients or both, I wondered. I didn't ask. 

On the way out of the Respiratory Room, I found myself suddenly saying, 'love and thanks to all of you here.' My voice cracked and I had to swallow back the tears. 

I drove home and told my girl to, 'have a relaxing shower' (euphemism for the Chernobyl scene I was running in my head). I did the same and threw our clothes straight in the washing machine.

My mum's cancer treatment is now on hold. The young girl next door is due a baby today. I saw her talking to her elderly mum through a window. Covid-19 is affecting everyone, directly or indirectly. 

I'll need to watch some escapist fluff TV tonight. This is hard, people. Let's keep talking. 

Wednesday, March 25, 2020

Scared Now

 Last night I watched Channel 4 news (discreetly on my phone, so the kids couldn't see). An ICU specialist calmly and professionally described a 'tsunami' of critical cases about to hit UK hospitals and said help was needed on 'an industrial scale.'

He said London could run out of intensive care hospital beds by the weekend. Anxiety rattled through me, in a way it hasn't done for years. 

Every day on twitter, I tweet the UK government to add to the pressure to do MORE on testing. It's a national scandal that frontline NHS staff are still not getting enough protective equipment. The UK knew about this threat since January.

I'm not a scientist, but even I could see that Wuhan and Italy could come here. 

As some of you know, our girl, Tess has had an asthma-related, persistent cough since January. In February, she tested negative for COVID-19 (in the very early days, when you could still get a test!) She was off school for about 4 weeks out of 6. 

We've followed GP's advice and upped her asthma meds. She  improved, then relapsed several times. We have been mostly in isolation for, what, 10 days? Now every time her cough worsens into coughing fits, (as it did last night), my stomach is in knots.

I don't want to have to take her anywhere near a hospital right now. The infection risk is too high. She slept okay, eventually, but I hear her cough and cough, as I type this. Sigh. 

This is nerve-jangling and no fun whatsoever.  But you know that too. 

Tuesday, March 24, 2020

Day 1, Lockdown

It's all moving at breakneck speed now. I knew it had to. I wanted it to, but it's still a shock. 

It seems like a different world, when we casually drove to Loch Lomond 3 days ago. We kept more than 2 meters from the few others who were milling about, but I now feel a bit sheepish about going there.

It's difficult to find a spare hour to draft a blog post, as I need to be available to the kids. I am already scrolling my phone too often. 

The most calming place to sit is in my garden, beside my solar-powered fountain. Trickle, trickle, trickle and the birds tweep, tweep, tweep

I can chat to two goldfish and a bunch of frogspawn while I  reflect on both the folly and the beauty of humanity, while also wondering what cupboard supplies I can throw together for  a make-do dinner. 

Family harmony is okay for now. Nobody wants to throttle anybody. So far! I know we are lucky. I am in awe of the NHS staff and their brave dedication. Utter heroes.