Just said good-bye to you and Mum

Mom called to say you were struggling so I left work early this week to see how I could help back up in Scotland.

I’ve just now waved good-bye to you and you’ve driven off to the hospital with Mum. The time is 15:49 on 5 March 2020, an almost dreichit Thursday. Your brother made cinnamon buns this morning before heading to school. He left in a huff because his Mum and I didn’t help him make a molded cake Starbucks cardboard cup to complete his “Breakfast at Tiffany’s” concept bake for a contest we learned about minutes before.

I’m writing this because I’m feeling quite a lot of dread in my stomach and I’m hoping I will see you again soon. This has not been an ordinary bout of illness. You explained earlier that today was going to be the 7th time you saw the doctors. You first felt wrong 12 days ago now, and since then, you’ve been on a fluctuating attack of flu-like symptoms from muscle aches to fevers. Your temperature in particular has been a bit scary. I sat by your bed with a bowl of water and a cloth and mopped you to try and bring down the fever and your mother has been doing the same all week as I’ve been working away in London.

Today the number of confirmed cases of Corona Virus in the UK jumped from 85 to 115 and the first death from the virus happened in Berkshire.

You were at the doctor’s yesterday and they took a lot of blood, urine and swabs and today we had calls with them but none of them can explain what’s happening to you (we’re hearing the word “inconclusive” a lot more than I’d like to).

The good news is when last I spoke to Mum you’d been admitted and cannulated (after some struggle) and your tachycardia and raised temperature were being monitored more closely and hopefully somehow mitigated… Mum says you seem less scared which is great because even second-hand, I’m scared for you and I can only imagine how you must feel (not least given your level of physical exhaustion).

I hope you sleep more soundly tonight that you did last night. I miss you and I love you and am bursting to see you tomorrow.

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Mum logged the progression of your illness for the record as we were struggling to get the doctor. Not sure why I feel the need to put this here but hey…

12 March

Nineteen days since you reported your first symptoms. You’re asleep again, but finally in a much better state:-)

The miracle above is a tray of dodgy hospital chicken curry with most of it missing because it’s in your tummy. They started a new treatment this morning and the team leads have come to an agreement on a diagnosis. Turns out you have an extremely rare condition, so rare in fact that the docs have said “we actually know next to nothing about this”.

I’m not fully exhalling yet but all digits are crossed that this is it and that you’re on the mend!

11 March

You’re asleep but not restful. The meds can mess with your dreams apparently. The good news is they think they’ve worked it out and from tomorrow morning they’re expecting to see improvements. Fingers crossed you’ve made it through this:-)

10 March

It’s day seventeen and I’ve just left you with Mum and the team at the hospital. You’re stull suffering with pain in your joints and fluctuating temperature:-(

We still don’t know what’s wrong but the docs have done more tests and they’re widening the scope of the investigation from infectious diseases. More news hopefully soon. New specialist seeing you tomorrow so I hope that will bring good news or at least a light at the end of the tunel being turned on again.

Updates on Sunday 8 March

I spent last night in hospital with you and on balance you seemed more peaceful with your discomfort better managed. They started you on a broad-spectrum antibiotic after dinner yesterday and they continued to take bloods for the “daily MOT”

You’re still running a temperature and still have massive aches and pains. This lunchtime the nurse gave you codeine and you slept a bit. Given it’s now two weeks since your fever started I’m still worried but less so now that you’re under closer observation. Your health people were really experienced today, phlebotomist was in and out in a flash (literally) and the nurse moved your cannula with minimum fuss:-)

Mum’s just texted me with news that they might have cracked a diagnosis:-)

That feels like you’ve still got a fight ahead of you but that we’re on the right track.

Progression from first symptoms

Day 1: Saturday, 22 February 2020

• Searing headache. Went to bed for Saturday and Sunday.
• Psoriasis flare up on scalp (wet scabs).

Day 3

• Went to school, very tired, still had headache, exhausted all day. No appetite.
• Came home, collapsed on the sofa.
• Took temperature 39+C. Went to bed.

Day 4

• Heartburn, headache, nausea, exhaustion, swollen glands, neck very sore.
• Temp 38+C controlled with paracetamol & ibuprofen.
• Really bad shakes. Vomited in the night.

Day 5

• Stiff neck, headache, temperature, nausea, heartburn.
• First sign of rash. Screened at Larbert.
• Temperature 38+C controlled by paracetamol.
• Stopped taking ibuprofen to prevent heartburn and nausea.

Day 6

• Rash worsened especially on lower back.
• Still had flu symptoms, headache, temperature, swollen glands, aches.

Day 7

• Rash even worse. Temperature 38+C controlled by paracetamol. Hot sweaty and uncomfortable,
• Visited Doctor. Given anti-histamine for rash.
• Got home from doctor, noticed rash had spread to arms and legs. Pain/itchiness of rash mitigated by prescribed meds

Day 8

• Rash improved on lower back, more intense elsewhere.
• Able to eat and drink a small amount. Rice pudding, Doritos.

Day 9

• Feeling much better, ate lentil soup and chicken. Drank normally. Temperature 37+C.
• At 6pm, temperature spiked back up to 39+C. Did not respond do paracetamol. Nausea, severe joint pain, elbow and hips, especially right wrist. Rash worsened.
• Controlled temp with cold compresses throughout the night.

Day 10

• Went to dr. very weak and nauseated, almost vomited in doctor’s surgery. Unable to eat and drinking v little. - Appointment made for blood test on Tuesday morning as unable to have blood taken on Monday. Managed to eat soft tuna sandwich and soup, and drank lots of water and diluted juice.
• Dr O’Connor offered anti-emetic tablets, CU-1 turned it down.
• Temperature spiked all night, 39+C, cold compresses throughout the night, in physical pain. Rash worse.

Day 11

• Very weak, achy, nauseated, muscle pain, couldn’t manage stairs. Temp 39+C. Drank diluting juice, ate three mouthful rice pudding, same of mashed potato.
• Temperature dipped to 37.8C, below 38C for first time in two days. Back up to 38.3C at 13.00
• Canceled morning blood test as too unwell. Back up to 38.3C at 1pm.
• Notes: Nicki spoke to Doctor S because Dr O had stressed that CU-1 should call the practice if she was still unwell or worse. CU-1 was feeling worse so we called. Explained to Dr S that CU-1 was feeling worse, that she was trapped in a vicious circle of temperature, nausea, weakness, inability to eat. He claimed that this did not reflect the notes taken by Dr O the previous day. He also claimed that when CU-1 presented in surgery on Friday with the rash, she appeared “bright and bubbly”. CU-1 did not agree with his assessment or his memory. She said she felt hot and sweaty and uncomfortable and that he commented on it in surgery. Dr S was completely unsympathetic, and admonishing, and seemed to threaten that if she didn’t eat or drink she would end up in Larbert as if it were a punishment. Made an emergency appointment for this afternoon (let’s hope we don’t have to work with Doctor S any time soon).

Day 12

• Still very weak, knee continues to be a problem, anti emetics cause vomiting so not taking, little food
• In bed most of the day temp 39+ in the evening, supo of 1000mg paracetamol before bed
• Mop head cheeks and arms into the night, sleep very broken

Today: Thursday, 5 March 2020

• Managed to sleep after second dose of paracetamol at 2am and woke 9.30
• Lots of tension waiting for the returns from the blood tests
• Pain and stress returns around 11:00 temperature, tears, fear
• Speak to doctor at 12.00
• Doc calls back at 14.30, instructed to report to hospital for admission
• Leave for Larbert before 16.00