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At long last…..

I wrote about my daughter’s visit to Great Ormond Street Hospital in London and the reasons for it earlier this year.

On that occasion I accompanied Eve for her tests and found writing about the experience therapeutic and a way to occupy time during hours of insomnia.

This time Eve has chosen her mum to accompany her and they leave for London today. Eve’s surgery will take place on Thursday.

Brain surgery.

I don’t know how this will affect postings over coming days. If there isn’t much or indeed nothing here, or the quality dips below the usual mince then I hope you’ll understand.

As you know I’m not religious but thanks to those friends who have said that they’ll keep Eve in their prayers. Others have sent positive and supportive messages, cards,books and little gifts.

Thank you all.

I am just thankful that Eve is in the hands of a world class neurologist and surgeon, and just as importantly, in the hands of superb nursing staff. Sue and Eve will have (free) accommodation at Weston House, the patient hotel at Great Ormond Street tonight before Eve is admitted tomorrow and I’m conscious of the fund raising that goes in to providing add ons like that.

From a purely selfish point of view I hope that tomorrow’s strike doesn’t affect Eve’s care or progress having waited so long for this, but on the other hand my previous paragraph sums up why public services are worth protecting.

For everyone.

Anyway, good luck my wee darling.

This is hopefully the start of a new life for you.

GOSH!

I kept a blog of my daughter Eve’s visit to Great Ormond Street Children’s Hospital in March.

At long last the decision has been made that she is suitable for brain surgery which will take place 6-8 weeks after we sign the consent form.

The surgery will of course entail another visit to London and GOSH.

We have become used to NHS time scales but even so, things are moving.

The outcome is by no means certain and there are associated risks.

However small these risks are does not minimise the apprehension.

When we visited Yorkhill Children’s Hospital in Glasgow on Wednesday for Eve’s appointment, we were early and went to the canteen in search of some coffee. There was a patients, parents and carers group at the entrance to the canteen with a table laden with sandwiches, fruit, juice and tea and coffee.

“Are you attending a clinic with your daughter?”

“Er yes”

“Please come and sit down and help yourself!”

There were parents and children there of different ethnic groups and backgrounds.
Kids with a variety of conditions and problems -and mums and dads.
All socialising in a spirit of mutual concern and support.

Whilst at Great Ormond Street, I wrote :

“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.”

The twenty minutes or so we spent with these other families at Yorkhill reinforced the point.

You Got to Have Faith?

Safely home now from our trip to London and stay at Great Ormond St Children’s Hospital. Just before the BLFP returns to ‘normal’ i.e. the random and idiosyncratic ramblings of a middle aged man, I’d like to mention one more aspect of GOSH.

Prior to, and during Eve’s stay at the hospital we had many messages of support from family and friends. Some of them said that we would be in their prayers. Readers and friends will know that I’m not one to indulge or believe in such things myself but it was touching nonetheless that we were in the thoughts of those friends.

At the hospital there is a multi faith chapel. It is described in leaflets for GOSH as “A place of worship for those of any faith or simply a quiet place for those of none”.

I therefore found myself in a quiet place:

You can see from the photo the various soft toys and keepsakes that are on display. They are there for various symbolic reasons be it hope, thanks or remembrance. It is known as the Teddy Bears’ Choir.

My reflection on that receives a jolt when I read this notice:

There are many (hundreds of) cards on display too. One said “We will always remember you. Please take care of Oliver”. Another read “You are in our thoughts and we pray for Emma”. These little vignettes each had a hidden story behind them.

Who was the poor child whom the card was directed to? Was Oliver a brother or a pet? Or was he one of the teddy bears on display?

How did things turn out for Emma?

Below is the poignant book of remembrance which records the passing of patients on a particular day. This was the entry for Friday 11th March:

There was also a book of intercession, packed with requests for prayers for young patients.

My visit to the chapel had been really for something to do when I was required not to be in the ward. I left to find that the team were still busy with Eve and I went back. By this time a preacher was giving thanks to whichever higher power for the success of a child’s operation. Her ‘congregation’ consisted of one man and one woman, presumably the parents of the child in question.

I’m not religious at all.

But everyone needs a quiet place at one time or another.

Friday

Eve had her final two tests at Great Ormond Street today. What they call a functioning MRI scan, where the scan is done whilst the patient answers questions, was followed by a repeat of Wednesday’s SPECT scan, this time under ‘normal’ conditions for comparison purposes.

Eve has been an absolute trouper and has had not one complaint about the injections, the lying still for 40 minutes at a time, the deliberate inducing of seizures, the electrodes glued to her head etc. etc.

When it came to say goodbye and thank you to the nursing staff at Great Ormond Street, I am not ashamed to say that I cried like a big jessie. I have stayed with Eve in two other hospitals. Hospitals where patients and parents can’t get a decent night’s sleep for unnecessary noise, regrettably much of it from staff treating the night shift as an opportunity for a loud gossip and laugh.

The nursing staff at GOSH are thoroughly professional in that respect, to the extent that a pin dropping would shatter the peace.

So to all the staff at the Tiger Ward at Great Ormond Street I send Eve’s and my thanks. In particular the genial Irish nurse in charge, Tom who is not only a thoroughly good bloke, but someone who I think gets a great deal of satisfaction from his job. However Tom has a great team of women behind him and I thank each and every one of them for their dedication, patience and professionalism.

To Kelly and Laura from the Telemetry team, thank you for everything. To the staff at the MRI dept and those who conducted the SPECT test, take a bow.

I’m typing this from the Patient’s Hotel, just across the road from GOSH. It is 11pm and I’ve just heard about the awful events in Japan.

A fox has just run across the courtyard outside.

News is coming through that our return flight to Glasgow could be delayed due to heavy snowfall.

We’re back in the real world.

Thursday

Thursday:

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”.

Goodness.

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.

Wednesday

Wednesday.

This was the most important day so far in our stay at Great Ormond Street. The SPECT scan cannot be done anywhere else in the UK but at GOSH. To summarise it briefly, a radioactive isotope dye is injected into the patient at onset of seizure.

Because blood rushes to the area of the brain where the seizure has started, the dye is deposited in that area. The brain is then scanned and the data recorded.

To do the test we had a five hour window in which a nurse was standing by with a syringe full of the radioactive dye, in this case Tom a cheerful Irish chap who puts his patients at ease with a laid back style and attitude.

Eve’s meds were withdrawn completely this morning. The telemetry team, Kelly and Laura decided to help a seizure on its way and after 5 minutes of Eve blowing vigorously at a toy windmill, and then being told to close her eyes, the event happened. Immediately Tom injected the dye and then they gave Eve the morning medication that she had missed as they now had the info.

The scan, just like the MRI scan she had on Monday requires the patient to lie completely still for 35 minutes. Again Eve did impeccably well and was up to the task.

More psychology tests in the afternoon and then the task of un-glueing over 30 electrodes from Eve’s hair and a very welcome bath for the patient.

She had another wee seizure later and was feeling pretty rough but hopefully now she’s back on full meds things will settle down a bit.

A repeat of the SPECT test will be done on Friday but this time without the seizure. This is done for comparison purposes and wont be nearly as traumatic. On Friday Eve will also undergo another MRI scan of a different type.

Tomorrow (Thursday) a day of activities, including some school work, is planned. At the moment (9:50 pm Wednesday) the patient is feeling a bit rough after a particularly demanding and stressful day so we’ll have to make an assessment in the morning on how fit she is to participate.

A whole lot of positives from the week so far. The telemetry team were delighted to have recorded such good and detailed information. This isn’t always the case, due to the unpredictability of the condition so things have worked out well within that bigger picture for Eve.

Tuesday

Tuesday:

Today at Great Ormond Street Hospital, we had a meeting with Eve’s medical team in the morning. There were about eight doctors and medical people various of whom were chipping in with comments and observations relevant to Eve’s case with hardly a reference to notes.

Epilepsy is a generic name for seizure disorder. There are many, many different types and diagnoses and the condition affects each individual in different ways. That is why when a team like this visists, and displays such individual and definitive insight it really gives the patient and their family such a boost.

There is nothing worse than seeing a doctor flicking and scanning through notes and asking questions that anyone even remotely connected with the patient should be able to answer.

The doctors were very impressed wth the information provided via Seizure Tracker. It is one thing to keep a seizure diary but the clear and concise format provided by Seizure Tracker, where a doctor can see the seizure record at a glance in graphs and charts is a very valuable and precious resource. I was amazed that the doctors didn’t know about the site. As well as providing the numbers Seizure Tracker also records the medications and rescue medicines and charts various information.

I had envisaged (and had been promised) ward wi-fi access which would have allowed me instant bedside access to information via the site to any passing doctor or other interested party.

Instead one doctor took me to her computer and I showed her Eve’s case history on Seizure Tracker. She was able to navigate the site and got the whole thing instantly. The previously rather stern doctor was immediately engaged and impressed. “This is quite amazing! – I can’t believe we have not heard of this before”. She printed off screeds of charts and information and I have a feeling that this resource will be recommended to other patients and their families.

Having dropped Eve to half medication, the doctors hoped that we could capture one of her events via telemetry. The drop in meds is an attempt at inducing seizures. As I mentioned she has over thirty electrodes on her head and a video camera constantly records her movements. This is what they call telemetry. I had been coached in what to do in the event of something happening. I was to make sure I wasn’t blocking the camera and was to clearly describe what was happening, i.e. provide a running commentary.

I was to make a statement to Eve during the event and ask if she could remember it afterwards. Then as she came out of the seizure I was to give her various instructions to see what she could understand and follow.

Well eventually we got an event on camera and I remembered all the stuff. The telemetry team were delighted with the quality of information they got from the video which they can watch along with a simultaneous recording of the readings from the electrodes.

During the day there were also tests from the psychology team who gave Eve written and verbal tests in all manner of subjects.

It’s a busy place!

If it isn’t medical or psychology staff, then there will be a play leader or Radio Lollipop volunteer or someone coming in to see us.

Yesterday there were two clowns doing wee impromptu shows in the ward, great for lifting the spirits of the younger kids here.

During the evening and after a rather tiring day we wound down with Snakes and Ladders, Ludo and one of these timber pile games where you have to remove blocks from the pile without it collapsing. Anything to ward off boredom and, well fedupness.

Tomorrow the medication is to be withdrawn completely. The idea then is to inject Eve with an isotope dye whist she is going into a seizure. This will allow the telemetry team to see the blood flow in her brain as the seizure develops.

It’s a strange feeling. Most of the time I’d do anything to prevent my daughter suffering a seizure.

Tomorrow I’ll be almost willing it to happen.

(Thanks to the satellite flying over at the right height angle I was able to upload this at 5:30 am Wednesday having written in on notepad in our room in the hour previous. This Vodafone mobile access is bloody temperamental!)

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