Our beautiful baby daughter Anabelle was born sleeping June 2010.
Blessed with the screaming arrivals of our gorgeous rainbow sons,
Alexander October 2011, Zachary November 2013 and Lucas July 2016.

After Anabelle - Raising Rainbows
Heartbreak. Joy. Death. Life. But most of all Love.

Tuesday, 5 April 2011

Transverse Myelitis

I really hate going to the Royal Gwent Hospital for appointments. Situated in the centre of the city means that at busy times of the day the road outside the hospital is gridlocked, the car park is ridiculously small and unfit for purpose for a busy hospital and cars are often queued everywhere waiting for a space which only makes the gridlocked situation even worse.  Your best bet is always to park away from the hospital and walk.  I often wonder if you were to go to the Gwent in the car in an emergency where on earth would you be able to dump it within the grounds. 

In short it is a nightmare. Hence why through Anabelle's pregnancy I was booked into Neville Hall Hospital in Abergavenny; yes it is a bit of a drive, but far less stress than the alternative hospital!

Even the day we returned from honeymoon and travelled to the Gwent with Jon suffering horrific chest pains; we had to park away from the hospital and walk in a bit. In hindsight now this was a stupid and I should've dumped the car. As it turned out Jon was seriously ill with a pulmonary embolism and several clots in his lungs as well as pneumonia; a 10 day stay followed. 

Today we had to visit the Royal Gwent for Jon's follow up neurologist appointment. As predicted the carpark was queuing and the grounds gridlocked. So park away we did, having to walk in in the rain; even with an umbrella and coat getting damp legs and having to sit in a waiting room feeling cold and shivery. Yuck. 

You'll remember that for the last 12 months (yes it really is that long now) Jon has had next to no feeling in his hands. Investigations have been slow going, but to date he has had two MRI scans, conductance tests and a lumber puncture.  The second of the MRI scans showed that Jon had inflammation in his spinal cord which accounted for the nerves and feeling being affected in his hands; the lumber puncture was then ordered to rule out anything nasty.   Today we finally got the chance to speak to the neurologist about all these results. 

Jon's condition has been described as a Transverse Myelitis. 

The lumber puncture ruled out nasties (and for this I thank God) but confirmed a raised protein element which fitted with the MRI scan images and inflammation. The inflammation causing the damage could've been caused by an infection, but they don't really know. It could be like this forever, it could get a bit better, it could go back to normal, they don't really know.  They could give strong steroids and other drugs to try and aid recovery, but success of such treatments are not guaranteed and the potential side affects horrible, so the Doctors and ourselves are reluctant to go down that route. 

Now another MRI is ordered to see if the inflammation has got worse, better or stayed the same in the last six months, and wait another six months to see the neurologist again. So it is a waiting game. Stuck in a limbo where Jon has to live with this condition that is debilitating; he struggles with buttons and getting dressed, knifes and forks, Xbox controllers and mouse buttons, cannot really hold a pen or write anymore, constantly dropping things. Anything that requires fine motor control, manipulation and dexterity is a challenge. 

Where we just have to hope it will get better, not really knowing if it ever will. Sometimes we just wonder when we are going to be given a break. 

2 comments:

Francesca said...

Oh Caz, much love xxxxx

Nanny Davies/ julie said...

eventually things will get better. It may not seem so at the moment, but it will!
There is sunshine behind every cloud.
all our love julie and mark.

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Caz
After Anabelle - Raising Rainbows. I'm Caz, Mummy to beautiful angel Belle and my wonderful rainbow boys, Xander, Zachy and Luc. Wife to Jon. Twitter @cazem Instagram @cazzyem
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