Another psychological test for Eve this morning. These tests are to determine what effect the condition is having on her learning and reasoning skills. Despite having missed so much school, she has managed to keep up to the average in many subjects and is particularly good at maths.
The verbal/language side of things needs a bit of work. This is because the area of the brain responsible for language is where the seizures are starting. So even though Eve has pretty good communication skills and can express herself perfectly well, Sometimes she’ll struggle to find a common word which five minutes before or after won’t be a problem.
There is a “brain fog” with her sometimes and we have always put this down to side effects of the various medications but it has been suggested that it may be the epilepsy itself
While this latest test is being conducted, I go to the ward communal kitchen to make a cup of tea. I speak to a woman who is staying here with her son and he has the same problem. Our brief conversation provides some mutual moral support. Another lady is here with her son who has not only epilepsy but some other pretty severe learning issues. He does seem to love music though and yesterday some musicians came round and played live in his room.
The volunteers here do fantastic work. Eve has been kept interested and occupied in arts and crafts by several volunteer agency representatives who have come round with bits and pieces for her to do.
I have been vaguely aware of an older couple in the next room staying with a wee boy. I assume correctly that they are the boy’s grandparents.
There had been a real commotion on the ward the previous evening whilst they rushed this wee lad down to an emergency room. The grandparents explain that until six weeks ago he had been a normal healthy one year old boy but then that something had happened. Initially there had been talk of epilepsy but it had turned out that he had in fact suffered a stroke.
“The outlook is pretty bleak” said the grandfather. “It’s apparently genetic” said the boy’s grandmother, adding “But we can’t think of anyone in either family being affected before”.
I have noticed another lady pacing up and down the ward with a wee boy in a pushchair who has a kind of scaffold arranged on his shoulders to keep his head still. He looks as if he has suffered a pretty severe head injury. It’s clear the mother doesn’t want to speak about it and that’s fine.
As in most, if not all, cases of adversity one finds oneself in complete sympathy with others in a similar situation. You become interested in their trials and tribulations and naturally find a common bond and you want not only your own child to have a good outcome but you find yourself hoping and wishing for progress for others you have only just met.
The natural empathy of human beings is a very powerful thing. It may take suffering or trauma to bring it out and let it flourish but its there in most of us.
As if to illustrate that point, as I leave the kitchen, the grandmother of the wee boy says “ I hope they make good progress with your daughter”
With the latest test over, Tom the senior nurse says that there is nothing else for Eve to hang around for this afternoon and suggests that if we want to go out for a few hours that would be fine.
So Eve, despite still having the cannula needle on the back of her hand gets changed and we get the tube from Russell Square. Our first stop is Covent Garden. Eve loves the market there with its unusual stalls housed in what was London’s fruit market until the 1970’s. I feel a bit apprehensive as she is as white as a sheet and isn’t saying much – often a sign that she’s not feeling too good.
However in this constant game of benefit v risk I’m pleased that she’s getting some fresh air and vitamin D. I have her emergency medication and know that if anything goes wrong we can jump in a cab and be back at GOSH fairly quickly (traffic permitting)
After a wander round Covent Garden I wonder if Eve would like to go to one of the many museums in the area. The Transport Museum is at Covent Garden and the British Museum is quite near GOSH.
This idea isn’t received too well and instead we head for Knightsbridge and Harrods. We progress through the jewellery section. Here is one of the watches.
For payment terms see Easyjet's tarrif for Kit Kats and blueberry muffins.
Yes it does say £121,000. Not even a brand I’ve heard of.
I have developed an almost subconscious conversion chart and wonder what that amount of money could do to help the wee boy who had the stroke. Instead it will indulge the whim of someone with far, far too much wealth than is good for one person.
Not the Pet Kingdom - Just a corner of the perfume dept.
We go to the top floor where, along with the Georgian Restaurant there is “Pet Kingdom” and “Toy Kingdom” There were actually puppies offered for sale – a Chihuahua or a Boston Terrier? Your own wee handbag dug. A snip at only £2500.
Boston Terrier Pups
OK, you can have the dog. Just don't ask for a watch!
A man in a top hat holds the door open for us as we leave. On the tube again, we get off at Piccadilly Circus and start walking towards Oxford Circus. We find a quiet place to have something to eat. I order lasagne and completely fail to notice that it’s the vegetarian variety very nice it was, and Eve has a chicken burger.
Suitably sustained we decide to get back to the hospital.
Tomorrow (Friday) is a big day with the second part of Eve’s SPECT test and another MRI, this time to be done whilst she does various activities.
After that, and a further consultation meeting with the epilepsy nurse and her team, I’m hoping to meet up with Johnnie, an old friend with whom I worked in London in a previous life. He’s booked us a lunch table at an Italian restaurant just round the corner and all being well well meet up for the first time in over 30 years.
I’m actually quite surprised how quickly time has gone (The 30 years and the four days).
Tomorrow evening it’ll be back to the Patient’s Hotel and then home on Saturday.
I’m hoping that it won’t be too long before Eve is back here, either with me or her mum, to have the operation which could make such a huge and crucial difference to her young life.
That remains just a hope at the moment.
Maybe, just maybe, the information gained this week will go a long way to turning that hope, that dream, into reality.
Filed under: Medical | Tagged: epilepsy, great ormond street hospital | 3 Comments »