I normally write on here about fabric and the other stuff in my house, but a week ago today our lives changed immeasurably and I thought now would be a good time to write it down.

We have two little girls: Marigold who turned one last week and four year old Clover.  Clover is in many ways a typical four year old: obsessed with mermaids, princesses and the like, while baby Marigold worships her (with the occasional bite or toy snatch thrown in).

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Sisters together: this photo was taken at Marigold’s birthday party, two days after she first fell ill

It all started with a call from nursery two weeks ago: Clover was running a fever and I felt embarrassed because I’d not long dropped her off and hadn’t noticed.  I collected her and over the next few days she lived with some sort of nondescript viral illness which caused her temperature to go up and down.  One minute she felt awful and said her feet were cold and the next she was up and about again playing.  I ended up getting her seen by the out of hours doctor at the hospital a few days later as it was a bank holiday and there was a confirmed case of scarlet fever at her nursery, plus she had developed a small rash on her chin.  The doctor said it was a virus, but not scarlet fever and so we went home with instructions to give Calpol as and when required.

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Two hospital trips in one day, but no real answers

That same day but in the evening, I took her back to hospital (this time directly to A&E) as she suddenly developed a cough which wouldn’t even allow her to pause for breath.  Her vital signs were checked and I was advised to just let the cough run its course and I took her home at 2am when it eventually stopped.

Over the next couple of days, I was expecting her to get better as that’s what happens with illness, right?  But the fever and lethargy went on and on.  She spent her time lying on the floor sleeping, then would get up for a few minutes to play, then would rest or sleep again

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The day before the paralysis started to set in – poorly but playing when she had the energy

Exactly a week after the first symptoms appeared, I decided to take her to our GP surgery as she wasn’t showing any sign of recovering.  The day started with her falling over after getting out of bed and I noticed she had a bit of a limp, but discounted it as dizziness from the virus.  When she fell over again downstairs, I still wasn’t concerned as we’ve had a few fake falls in the past, especially when she’s been trying to learn to ride her bike.  We had a long wait at the surgery and she slept throughout.  The nurse we saw decided she needed to be seen by a doctor and he took a brief history then told me she needed to go to hospital as she’d been ill for so long, so I took the referral letter and headed home quickly to pack.

Clover was seen fairly quickly at the Paediatric Assessment Unit; a full examination revealed an ear infection but not much else so we were discharged under the care of the hospital and advised to ring immediately if anything changed or worsened.  It was only once we got home and she was no longer in the pushchair or the car seat that she was having to walk again and she told me she couldn’t.  I thought she was pretending as she dreams of being a mermaid and often lies on the floor acting out the role.  I dismissed it until she said she needed the loo and I told her to just go which resulted in her crying desperately and saying she couldn’t move her legs.  Unease began to set in so I rang the hospital to get advice from a doctor on the unit; at this point I wasn’t sure how severe it was and tried to explain it away through ear infection dizziness, but at the same time at the back of my mind I was thinking of an illness a friend had had a few years ago called Guillain Barre Syndrome which causes paralysis and usually is triggered by a virus.  The doctor I spoke to said Guillain Barre was unlikely and as she had already settled to bed and still had some movement in her legs she would be ok at home for the night, then I could update them in the morning.

We had an awful night; I had nightmares and Clover woke me every so often to ask if I could move her legs for her to make her more comfortable.  Only half awake, I realised there was something serious going on as it would be impossible to continue making stuff up throughout the night.  Early in the morning, we got up, packed some bags and headed straight to the hospital.

I’m trying to remember the point at which the real panic and terror set in.  It was probably when a doctor tested her reflexes with a hammer and there was no response at all.  The fear washed over me again when we had to take her into a small room and have masses of blood taken and a cannula inserted into her arm.  And yet again when it was decided that various consultants would be called to come and take a look at her.

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Guillain Barre being discussed as a serious possibility and the IV immunoglobulin starts

It was a few hours into our admission that a paediatrician came to see her and told us that Guillain Barre Syndrome was being considered as a possibility.  I felt slight relief as it was something I understood a little about.  It’s a rare condition which is usually triggered by a virus and causes your body to start attacking your nervous system, causing paralysis, usually from the feet up.  It’s very serious, usually requiring a long stay in hospital with rehabilition, but in most cases patients do recover.

Based on this possible diagnosis, there was now a plan: start Clover on intravenous immunoglobulin (a blood product which helps the immune system to recover), give intravenous antivirals and antibiotics, and transfer Clover to specialist neurology unit in nearby Bristol where she would have a lumbar puncture and MRI scan.

The hours and days started to blur as Clover’s condition declined.  The paralysis and discomfort travelled up her body and she became irritable and distressed.  We also found it hard to understand what she was saying which only added to our problems.  But in between periods of distress she would be able to play for a while, or at least take an interest in things going on around her.

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Family life in hospital

We finally transferred to Bristol by amulance two days after her admission, when a bed became available in the neurology unit.  I went with her and felt a mixture of alarm and relief when the blue lights were put on for almost the entire journey.  Just twenty minutes later we reached A&E in Bristol and she was settled into her room.

I’m sorry this story is so long; I don’t really know how to shorten it, but also from this point on it gets harder to describe events in a linear fashion as the days have started to blur.

Basically, the hospital ward is now our life.  Clover had her MRI and lumbar puncture under general anaesthetic the following day and we learned that diagnosis is not an exact art, but rather by a process of elimination.  The MRI showed damage to the nervous system consistent with Guillain Barre, and the damage has extended to her upper body and face.  Her arms are ‘wobbly’ by her own description and it explains why she’s so hard to understand now, and also why her eyelids droop a little.  All other test results are gradually coming back negative, which contributes to the likelihood of Guillain Barre.

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Here’s what Clover thinks of hospital life
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The enthusiastic participation of the younger sibling…

There is optimism for a full recovery, but it’ll take a long time.  She’ll be in hospital for a few weeks yet and may not walk for a good time to come (or at least not well enough for longer distances).  We are trying to be optimistic and positive, but at the same time we need to be practical and realistic about how our lives will change in the short to medium term.  My partner and myself rotate shifts between hospital and home: the hospital person sleeps on a fold-down bed and spends most of the night awake with Clover and the home person gets the comfy bed but also a baby who wakes at 6.30am (however, it is marginally the easier option).  Whenever I’m home, I open mail, sort laundry, water plants, update friends and family and do lots of sewing.  It’s not rest as such but its downtime from the relentlessness of hospital life, and it’s also about keeping everyday life going as one day soon I hope we can bring her home and pick up our regular life again.

Clover started daily physio sessions earlier in the week and despite her frequent reluctance to take part, we are seeing marked improvements each day.  Today she was given a supportive wheeled chair funded by the Jemima Layzell Trust in which she can eat, play and travel around and this has transformed her from a grumpy child slumped in bed all day into a happy girl playing for ages in the playroom and feeding herself.

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An early physio session: not fun to watch but being held in a sitting position like this was a positive step for her

There have been some funny moments too: her poor hair is totally matted from long periods lying in bed and we haven’t yet been able to tackle it.  I seriously considered asking the doctor to do something with it while she was under general anaesthetic.  Yesterday she got cross with us and told us we weren’t to laugh at anything.  Ever.  Cue us sitting in silence then bursting into stifled giggles over nothing, purely because we’d been told off.  Marigold’s visits to the wards usually bring mayhem too: if she’s not trying to eat things she’s found on the floor, she’s wrecking the playroom or trying to shout over the doctors when they do their ward rounds.

And so I’ll finish tonight’s story here, with a few photos from today.  I’m at home tonight and heard from my other half a few minutes ago that she’s still awake and in the chair, demanding to be taken to this place and that (it’s nearly midnight).  If wanting to get better counts for anything, then she’s got a great chance.

Meanwhile, wish us luck and I hope to write an update again in the near future.

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First session in the chair!  Words cannot describe how much her life is improved by it
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Sisters standing tall together
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In the sensory room with the play specialist

 

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Drawing is hard now because her hands are weak, but what a great start!
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