Tag Archives: scopes

What’s in a word

I’ve long been aware that when it comes to understanding M, it really pays to understand how he interprets and sees the world. As for so many who live with chronic illness, M’s life is coloured by his EGID and multiple food allergies, and his view of “normal” is understandably skewed by his daily experiences. Courtesy of katbiggie.comThe sad reality is that M has been living with the symptoms of EC for so long that he doesn’t always realise when something he’s feeling isn’t usual and we have often discovered a symptom months, or even years after it first started to happen. These problems are frequently something we could have helped resolve sooner and it is never clear just how long M has been coping with it on his own.

My first experience of this was when M had his second set of scopes done 2 years ago. The nurse had started him on Klean-prep via a NG-tube and told M to tell her if he started to have reflux whilst it was pumping into him. Reflux was something we hadn’t struggled with since he was a baby and so he didn’t know what she meant. My explanation that he might feel nauseous or have some sickness come up into his mouth was met by a puzzled look, “…but Mummy, I get sick in my mouth all the time, why do I need to tell her if that happens?” He was genuinely perplexed by this request and I was made suddenly aware that there was an awful lot more going on with him than we really knew about.

Strangely, during our latest GOSH admission, that issue with reflux once again raised its ugly head and yet again, M more or less accepted it as being back in his life without complaint. When we first learned about the reflux, we worked hard to uncover when it was happening most and started him on a daily medicine to help treat the symptoms. We quickly found that it appeared to be triggered when he ate potatoes and raisins and by cutting those from his diet as well as the new medication, the reflux fortunately seemed to ease. The day after we started the potato food challenge in hospital, M complained that he was struggling with some reflux and explained in extremely graphic details to nurses, dietician and registrar what he felt. Whilst they made note of this problem, disappointingly they didn’t do anything to ease the discomfort he was in and delivered that line of “…he just needs to push through this…” that I quickly came to hate. Their dismissive attitude shown so clearly in front of M and obviously picked up on by him despite the illusion of him being absorbed by the TV whilst plugged into his headphones, meant that he stopped mentioning it and the medics assumed that it was a one-off event only.

It wasn’t until they needed to start adding senna to the klean-prep to clear his system that we learned that M had not been 100% open about what was going on. The conversation had turned to whether he would willingly take the senna by mouth or if it was best pushed down his tube, when M casually commented that it didn’t really matter as he would end up tasting it either way. A little gentle prodding by his nurse soon revealed that the reflux had in fact been ongoing since the food challenges began and during that middle week of our stay, he had been experiencing the vile taste of the bowel prep in his mouth on a very regular basis.

This story for me explains why it is so important for the medical teams to understand that every child is an individual and have very different levels of what they can accept and cope with, particularly when it comes to gastro conditions. In M’s case, this means that knowing how to phrase questions and interpret his answers is key to learning more about how he feels, especially when it comes to his coping strategies. For a number of years, Mike and I have repeatedly told our consultant that we firmly believe M lives with a level of pain that he has come to accept as his “normal”. When you see M running around with his friends or experience the whirlwind force of his personality, this can be difficult to believe and the fact that, between my reluctance to allow either child to stay home from school unless they’re dying and M’s determination to be in the midst of everything as much as possible, he has remarkably good school attendance for a child with a chronic illness, is in stark contrast to the picture we’ve tried to paint.

It’s at times like these that the words used with M, and by M, can reveal the most. At one of the many meetings I had with his consultant during our admission, she and I had talked about what the future holds for M. She told me that we might just have to accept that he would need to live with a level of pain that others might consider unacceptable, so that he has a more varied diet to choose from and my words that he already lived with enough pain seemed to fall on deaf ears. It was only when M met with the lovely GOSH gastro psychologist half-way through our stay that he was finally able to talk about how he feels each and every day. Whats-in-a-wordShe quickly established that M differentiates between a “pain” and an “ache”, which meant that unless he was asked the right question, M would proffer surprising answers.

Of course, the truth of the matter is, as we have repeatedly said, M has an almost constant ache in his tummy and bowels that he has just accepted as part of his reality. He doesn’t call that “pain” and, perhaps because of my unwillingness to unnecessarily dope him up on Calpol at the drop of hat, he doesn’t expect to have anything more than a hot water bottle or wheat bag to treat that discomfort. M calls that an “ache” and when asked to rate how that feels, he cheerily announced it was usually around a 4, the level where they would start to offer pain relief on ward. So when he was asked by the nursing team if he was suffering any “pain”, his answer was almost always a no except when he was experiencing a severe tummy cramp – his definition of what a “pain” was. The nurses had been struggling to understand how he could be rating his pain at an 8 or 9 at one point, only to say less than 5 minutes later that he had no pain at all before they’d even had time to give him any pain relief. This insight into the workings of M’s mind was invaluable as it meant that finally we all – doctors, parents and M himself – were singing from the same hymn sheet and receiving accurate feedback from M about how he was feeling; and all because we now understood the power in a word.

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How to survive a hospital stay – the Parents Edition

Courtesy of yoast.com

Courtesy of yoast.com

When M was admitted to GOSH for a week for repeat scopes back in October 2013, I turned to the wonderful support network that is FABED and asked for some tips on the essential things I needed to take to get us both through that week.  The resulting list was my parent’s survival guide, a resource I found myself turning to once again before our most recent admission.  However, the one area I didn’t cover in that survival guide was what I did to get through those endless hours, especially when M was otherwise entertained or busy at hospital school and my lovely friend, F pinged me an email all the way from Canada to make this very point.  She had her own set of questions about what I’d got up to whilst M was in GOSH, telling me what I’d missed from my previous posts and I thought I’d share with you all my curiosity-satisfying answers.

Where did you sleep? – I do so hope you didn’t need a hotel

7176037017_45f555b6cc_zNo, no hotel for me, though actually there were times when a hotel room would have been invaluable.  I slept next to M’s bed in a modern version of a medieval torture device: a chair that supposedly converted to a bed, though I think sleeping on a mattress on the floor, or even just the bare floor itself, might have been more comfortable.  There were definitely some mornings when I would have killed for a good night’s sleep or the opportunity for a long soak in a hot bath, but sleeping in “the bay” with 3 other patients including 1 baby meant that my nights were often disturbed.  M’s cubicle contained 1 of the 2 sinks for the 4 beds, which meant that one notable night, I had doctors, nurses and parents trooping through past M’s bed in a steady stream during the early hours as they needed to wash or sanitise hands and access sterile gloves.

The long-term gastro ward is shockingly out-dated and the facilities don’t meet the needs of the patients or their parents.  Unbelievably there is just one bathroom for 16 beds and only 2 other toilet cubicles, so you were constantly having to keep an eye on the bathroom to make sure you could dash in there before it was in use again.  Given this was the location of the height chart too, you can imagine just how in demand that single room was.

What did you eat when you were there? (I can only imagine this expense adding up if you were buying all your own meals)

Courtesy of mirror.co.uk

Courtesy of mirror.co.uk

The expense certainly did add up as I had to provide all food and drink for myself during the admission.  The small kitchen had a fridge which parents were able to keep food in, but I often found myself heading out each day to get some fresh air as well as my meals for the day.  There was also a microwave and crockery and cutlery, so that did make having a hot meal a little easier.  I kept some bread and crackers for breakfast and then would go out to buy sandwiches, ready meals or other snacks for the rest of the day.  There are several supermarkets in the vicinity, so there was reasonable choice, though the largest shop is a Waitrose, which definitely didn’t help with the cost.

I didn’t really eat out too much, though I took G out for meals whilst she and Mike visited and I treated myself to the odd coffee or hot chocolate mid-morning from one of the nearby coffee shops.  I also had a really lovely dinner out with one of my fellow Mums on the ward.  We headed across the road from the hospital to a small Italian restaurant and enjoyed some delicious food, great conversation and a small glass of wine each, whilst the boys were under the watchful care of the nurses!

How did you pass time? – Surely M didn’t need you every second of the day?

The first few days M was reluctant to let me out of his sight for long, especially when he was struggling to cope with the effects of the bowel prep on his system.  He understood that I needed to go out and get something to eat so that I didn’t make myself ill, but I would bring the food back onto the ward to eat at his bedside.  He didn’t necessarily engage with me for most of that time, preferring to be plugged into the TV or playing his tablet or DS, but my presence was very much required.  I took a supply of magazines, books and various puzzle books with me as well as my laptop, so I was able to entertain myself whilst he was absorbed in what he was watching.

teaOnce he started going to school, I spent my time off the hospital ward as much as possible, taking walks in the local area and getting some fresh air or doing the more mundane chores of laundry or tidying up our very small bed area.  I was lucky enough to be able to arrange to meet up with several of the lovely FABED Mums whilst we were there too as their children came in for various appointments or procedures.  It was great to actually meet, sit down and chat with some of these folks who’ve been giving support over the last 4 years and to finally put faces to names.

Did you have opportunities to have ‘a break’?

My only breaks were relatively short ones when M was in school or the evening he went to Scouts.  Some parents lived close enough to be able to go home or even into work during the day, but being over 2 hours away from London made that impossible for me.  The 2 Saturdays when Mike visited, he spent most of his time with M, so G and I could go out and have some quality time together.  We went to a coffee shop for elevenses both weeks, I took her out for lunch the first week and the 3 of us went out for dinner both evenings before they headed home.  We were lucky that there are restaurants nearby that do gluten- and dairy-free food options, so eating out with G proved to be easy to do.  But that was it.  No other breaks for me as it was, all things considered, a relatively short admission and I needed to be advocating M’s needs during our time there, something I just couldn’t take a break from.

How do you stay sane while there?

friendsWho said I did?!  Truthfully, my sanity remained as much in tact as it did thanks to amazing support from family and friends.  The folks who dropped me an email, sent me a text, popped something in the post for M or even arranged for a beautiful bouquet of flowers to turn up completely unexpectedly.  And that’s not even thinking about the wonderful Mums I met on ward, who were all there for varying lengths of stay, for vastly different reasons and who gave me an ear to bend and a shoulder to cry on when I needed them the most.  Believe it or not, we had a lot of fun in the evenings, sitting in the bay, comparing stories, sharing opinions of nurses and consultants, chatting about life and generally putting the world to rights.  Those friendships were made in the hardest of times and the strangest of situations, but are worth more than their weight in gold.  I met amazing parents who are facing much bigger challenges than we have to cope with and yet go about everyday with a smile and a kind word for everyone they meet.  We all had our down days when we needed the support of those around us and I can’t think of a nicer bunch of people to have been through that experience with (Rhys, Lauren, Caroline – you know who you are and thank you!)

EGID – the real story

I am still reeling from the astounding response to my last blog post, Dear BBC Controller.  When I asked you, my wonderful readers, to share what I had written in a hope of raising some much-needed awareness about EGID, I have to admit to only expecting the odd person to possibly share the link on Facebook with a few of their friends and nothing prepared me for what happened next. From the 20 shares that I know about, that post gathered momentum and I experienced a fantastic demonstration of exactly what social media can do.  Within 48 hours of publication, that blog was viewed by over an amazing 1,800 people across 33 countries and the statistics are still creeping up on a daily basis.  I have been humbled by this response to my plea and I can do nothing more than extend my heartfelt thanks to you all.

One of the things I realised, however, is that I have never given a comprehensive explanation of EGID and that my last blog post may have left new readers wondering what on earth all the fuss was about. Those of you who follow my blog will have an understanding of how this chronic illness impacts our lives and for those who know our family personally, you have probably had a brief explanation of the disease along the way.  In that last blog post I didn’t want to go into the finer details of what exactly EGID is, so now I want to set the record straight, so to speak, and explain in a little more detail M’s condition.

17348-custom-ribbon-magnet-sticker-Eosinophilic+Disorders+++AwarenessEGID, or Eosinophilic Gastro-Intestinal Disorders, are a complex and chronic group of digestive system disorders caused by an abnormally raised level of eosinophils within the gastro-intestinal tract.  Eosinophils are an important type of white blood cell, which normally help the body fight off certain infections and parasites and are typically involved in attacking the causes of allergic reactions, thus protecting the body.  In some individuals, the body produces too many eosinophils in a particular part of the GI tract, which leads to chronic inflammation and can cause extensive tissue damage in that area.  It is currently thought that there is both auto-immune and genetic involvement in EGID, but further research will be needed to confirm these links.  Like many inflammatory bowel diseases, EGID is a classic waxing and waning condition, meaning that the symptoms and their severity can change on a daily basis.

This family of rare diseases is diagnosed depending on where in the GI tract the elevated eosinophilic count has been found:

  • Eosinophilc Oesophagits (EE or EoE) – in the oesophagus and is the most commonly diagnosed form of EGID
  • Eosinophilic Gastroenteritis (EG) – in the stomach and/or small intestine
  • Eosinophilic Enteritis (EGE) – in the small intestine
  • Eosinophilic Colitis (EC) – in the large intestine (colon)

This last one is the type that M has been diagnosed with, which means he has, in typical M-fashion, a relatively rare type of a rare chronic illness.  Statistics are not readily available as it was only first recognised during the first half of the 20th century, but over the last 20 years, cases have been recorded in the UK and there are currently in the region of 700 cases looked after at Great Ormond Street Hospital.  This suggests around 2,000 diagnosed cases across the UK as a whole and there are also known cases of EGID in other countries, including Australia and Canada, with a starting point of 3,000 people diagnosed in the USA.

Symptoms of EGID include:

  • Diarrhoea
  • Constipation
  • Blood and/or mucous in the stools
  • Stomach pains
  • Lethargy
  • Mouth Ulcers
  • Rash
  • Asthma attacks
  • Sore throat
  • Joint Pains
  • Headaches
  • Vomiting
  • Nausea
  • Reflux
  • Failure to thrive
  • Sudden weight loss
  • Loss of appetite
  • Mood swings
  • Excessive sweating/body odour
  • Loss of colour in the skin
  • Dark rings under the eyes

None of these symptoms is exclusive to EGID and not all are experienced by all patients.  We had noticed a number of these with M in the years leading up to his diagnosis and it was the odd combination of them – diarrhoea, poor weight gain, joint pains, mood swings, excessive sweating, body odour and dark shadows under his eyes – that led to our conclusion that this could well be what he had.

As eosinophils are part of the body’s response to allergic reactions, it comes as no surprise that many people with EGID also struggle with a varying level of food and environmental allergies. What makes it even harder is that these allergies can also wax and wane and therefore can change over the years.  allergiesWhen M was diagnosed we were asked to put him on a MEWS (Milk, Egg, Wheat, Soya) free diet, which is a common starting point for those with EGID.  Over the years, we have also had to remove gluten, potatoes, raisins and raspberries from his diet to try and alleviate his symptoms and we still don’t seem to have the answer to whether this list is complete or not.  Some of the lovely families we have met through FABED have had to go a step further and remove all foods from their child’s diet due to a constant flare-up of their EGID. These brave children are now tube-fed an elemental diet in an attempt to help them feel better and grow stronger.

These families have to cope with numerous hospital visits, regular hospital stays, invasive diagnostic procedures such as colonoscopies and endoscopies, tube-feeding, colostomies, huge amounts of medicines daily and the unavoidable emotional fall-out from children who long to be just like their peers.  All of this is why it’s important that the media realises that EGID is not about “Mr Allergies” and why such factually inaccurate portrayals of chronic illnesses are problematic for this EGID Mum.

 

If you are interested in finding out more about EGID, you can also look at these sites: 

FABED   CURED    Apfed   ausEE

***Breaking news – today I received an e-mail response to my complaint from the Holby City series producer.  He has offered to look into the research done for this story-line and will discuss it with me, over the phone, later this week***

Welcome to the House of Fun!

It may seem an unlikely description of M’s week-long stay at GOSH, but we did end up having a week that was filled with fun and not just fear.  I had dreaded the tedium of being confined to the ward and had managed to pull together some games and treats to see us both through.  What I hadn’t anticipated were the events and activities that would be “on tap” at GOSH itself.

Courtesy of magicfree,net

Courtesy of magicfree,net

Sadly M didn’t manage to get to the first of these opportunities as we were battling the interminable wait to get him admitted onto the ward on Monday morning and the rest of the week were barely able to leave his bed or the ward.  However, the week we were there was celebrating “50 years of National Play in Hospital”.  It recognised the hard work regularly put in by fully trained play workers, who go into the hospital setting and entertain the children who have been admitted.  The launch on the Monday included face-painting, magic shows and other entertainers to give that day’s visitors an escape from the often frightening reality of being in hospital.  You can read more about this special week here.

Courtesy of scouts.org.uk

Courtesy of scouts.org.uk

Tuesday’s adventure started with a visit at 6.45pm from the leaders of the GOSH Scouts and Guides group.  They had avoided disappointment by checking with the ward nurses whether there were any children that would be able to go to the weekly Scout meeting, either on their own or accompanied by their parent.  They appeared at the curtains to M’s cubicle and invited him along for an hour of creativity and socialising.  He refused point-blank to allow me to go with him and merrily trotted off with another child from the ward – disconnected from his drip and in a state of excitement to be escaping.

Just after 8pm he re-appeared, clutching a treasure box, leaf bracelet, sheets of word-searches, puzzles and colouring, and his new most treasured possession – his first Scouts badge.  M was filled with stories of the 10 other children he’d been with, what they’d been up to and, most importantly for him, the fact that several of the others had also had NG-tubes and the news that one little girl was even “drinking her milk through it, Mummy!” Scouts is a new experience for M, but the opportunity to not stand out from the crowd because of his tube and his allergies was one he couldn’t have missed and he would have loved to have stayed another week in hospital just to go to the next meeting!

20131020_184703Treats number 3 and 4 both arrived on Wednesday.  The first was the surprise arrival of a parcel from M’s godmother, Auntie L.  She had packed a “Bored box” with an array of treats to satisfy any small  boy – Top Trumps cards, a Lego Star Wars set, a magic set, 3 packs of Angry birds trading cards, a pack of silly putty and other bits and pieces were hidden inside.  M didn’t know where to start, but slowly and surely he made his way through the box, which kept him occupied not just for the rest of the week, but for days afterwards too.  Along with the box, M also received several Get Well cards from friends and family, which brightened his day as he loves to receive post and often moans that nothing ever drops through the door at home for him.

The final surprise for the week, was a visit from Dr Mattie, a clown doctor from the Theodora Children’s Trust.  The use of Giggle Doctors in Children’s hospitals has come under debate many times, including recently in an article published by The Guardian newspaper.  Whilst it cannot be denied that some children and adults are frightened by clowns – indeed, one of M’s nurses commented that the Clown doctors gave her nightmares – they cheered M’s day. M wasn’t amused by their jokes and he wasn’t that interested in the “Spot the difference” he was given, but he waited anxiously to check that Dr Mattie would stop and chat and not miss him out of his rounds, and was fascinated by the unbreakable bubbles that clung to every surface and constantly checked to see just how long those bubbles would last.  Perhaps that old adage is true and laughter really is the best medicine.

He might not be everyone's cup of tea, but he certainly made M smile.

He might not be everyone’s cup of tea, but he certainly made M smile.

A week is a long time

As I watched my active 7 year-old today, I realised that not many people would believe that 2 weeks ago he was in hospital going through 3 days of intensive bowel preparation, an anaesthetic, a colonoscopy and an endoscopy.  This child, who is currently refusing to give in to his tiredness and go to sleep, has been running around like a wild thing, laughing and having fun.  This time 2 weeks ago, he was quiet, in pain and reluctantly resigned to his fate.

A week ago, much to the surprise of friends and colleagues, despite having spent a week in GOSH, M was back at school as if nothing had happened.  He reluctantly agreed to my ruling of no PE for the week, but I couldn’t stop him running around the playground with his friends trying to catch up on his missed week of fun.  A week ago, we pulled him off the trampoline at home with a suggestion that bouncing around was perhaps not the most sensible thing after having investigative procedures on his GI tract – he has bounced back to full health, almost literally!

20131015_111936 20131016_173711

That Thursday was a long day for us all.  Mike had travelled to London on the Wednesday to spend time with M and help distract him from all that was planned.  As well as the extensive bowel prep, M had had a cannula put into his left hand on Wednesday afternoon and had once again impressed the nurses with his stoicism as he watched them put the needle in without shedding a tear.  He laughed and joked with them as they did it and even discussed whether they would need to put a second one in his other hand.

Mike arrived back on Kingfisher ward around 8am Thursday, bringing with him a much-needed croissant and vanilla latte for my breakfast.  M had been without food for 24 hours by this point and, whilst he accepted that I had to eat for my health, he didn’t want to see Mike eating food.  We sat with a nervous M and played endless rounds of Top Trumps as we waited for the nurses to come and prepare him for the scopes.  He eventually changed into a hospital gown and disappeared off to the Wii for one more game of Lego Batman with Mike to relieve the tension.

Finally, the nurse and consultant arrived to meet us and summon M to the investigation suite.  We took Cat in with him, but M was determined to prove how brave he was and asked me to take Cat back to his bed with me.  We kissed him good luck, watched as the anaesthetist put the “magic milk” into his cannula, heard him count unsuccessfully to 10 and then beat a hasty retreat back to his cubicle to wait for it all to be over.

Poor Cat, all ready for surgery, but relegated to wait instead

Poor Cat, all ready for surgery, but relegated to wait instead

Nearly an hour and a half later, and this time prepared to be waiting beyond the 45 minutes the hospital staff had said, the consultant appeared to talk through what he had seen during the procedure.  The best news was that the scopes looked much better than last time and whilst there were still obvious areas of inflammation, the damage had been reduced and consequently M bled considerably less than previously.  There are signs of some problems in his upper GI tract, but we need to wait for the biopsies to come back from the laboratory to see what they show.  Everything supports the EGID diagnosis and shows that the medicine and restricted diet are making a significant difference to his insides and we should continue to persevere with them.

Even better, M’s reaction to the anaesthetic was significantly better than the previous times and whilst there were some unexpected concerns with low blood pressure and pulse rate – he really is my son as I suffer the same problems – the hallucinogenic reaction was relatively mild and within 3 hours of coming round from the sedation, he was back playing the Wii with Mike., something we had never even imagined would be possible.

So now we’re on to our next wait until the results are returned and every week between now and our follow-up appointment is going to be an extremely long time.

Playing the waiting game

I have tried to write this post over and over again tonight and, having reached draft number 4, I’m still not 100% happy with it.  I’ve really struggled with how to put this past week into words without sounding long-winded or overly-dramatic or twee.  It was a tough week for us all and I’m not sure that there are really words that can encapsulate our emotions and reactions.  All I can try to do is to share our experiences and give you a sense of where we are now that we’ve reached the end of it all.  I’ve decided to split the week into more than one blog-post as there is just too much to share in one simple offering.

Courtesy of bbc.co.uk

Courtesy of bbc.co.uk

The first day was filled with long waits and I wish that this had been something I’d been prepared for, but my survival guide gurus hadn’t pointed this out as a possibility.  I was naïve in believing that the process of getting M booked in and admitted onto the ward would be a straightforward one, especially given the chaos of sorting the appointment out, but I had successfully talked myself out of my anxieties and lulled myself into a false sense of security.

Despite my last phone conversation with S confirming that I needed to have M at GOSH for 10am on Monday morning, the information hadn’t fully trickled through their systems and we started the day with a 20-minute wait to even get into the waiting area for the ward.  Having found M’s notes and confirmed that we were indeed due there at that time – no, it wasn’t a figment of my imagination –  we were then subject to a further 1 hour and 20 minutes waiting before M was seen by a nurse.

Fortunately for me, M discovered a sympathetic father in the waiting room, who was able to help him get the x-box working and gave him tips on how to play Lego Indiana Jones on it.  M and another boy tackled the game together whilst I took a seat nearby, where I was able to keep an eye on M as well as listen out for his name to be called.

Indiana Jones - a great distraction for a long wait

Indiana Jones – a great distraction for a long wait

Eventually I heard M’s name and the process of getting him booked in began.  His measurements was taken, discussions were had about when and how to tackle the various medical procedures that were needed over the next few days and finally we were shown to his bed.  It was at this point that the nurse apologised for the delay, “But we hadn’t been expecting M until 4pm” she said, I shrugged my shoulders and inwardly sighed.  We had a bed, the nurses were going to get the NG-tube fitted later to start him on the Klean-prep (a strong laxative) and all we needed for the time-being was some lunch.

Unfortunately, we had waited so long to be admitted that it was now too late to arrange a special diet meal for M and instead he and I wrapped up against the rain and headed out to a nearby supermarket to buy some M-friendly foods to satiate his appetite.  We filled the afternoon with activities and TV as well as participating in a brand new research study that M had been invited to join at the end of the week before.

The George Cross awarded for "acts of the greatest heroism or of the most conspicuous courage "

The George Cross awarded for “acts of the greatest heroism or of the most conspicuous courage “

It wasn’t until around 4.30pm that we finally tackled the matter of the NG-tube.  To say that I was, and still am, incredibly proud of my brave little boy is a gross understatement.  This was a new procedure for him and he sat without making a noise as they passed the tube through his nose and down into his tummy.  His distress at the pain was obvious as I watched a single, solitary tear roll down his cheek.  The only sound was uttered once it was in place, “Cuddle Mummy“.  That nearly broke my heart, to hear my usually lively, garrulous and loud lad reduced to a single heartfelt request.

They started him on the first 4 litres of the Klean-prep and so our wait began.  We had no idea whether M was still constipated or not after the summer, so the proposed plan of attack was 3 days on the Klean-prep at a rate of 4 litres a day, adding the standard pre-procedure laxatives of senna and picolax on day 3 and then, if there was any doubt whether his bowels were clear, an enema was booked for Thursday morning before the scopes happened.  By Wednesday, it was looking possible that the enema might be needed, but we finally had the necessary break-through on Wednesday evening and that little joy was avoided.

At this stage, M and I had been more or less confined to the hospital buildings since around 2pm on Monday.  I had been able to pop out to grab meals, but poor M hadn’t been able to leave at all.  We had taken advantage of 2 occasions of being disconnected from his drip and stretched his legs beyond the space of Kingfisher ward.   It had been an interminable 3 days and in very many ways, we still had a lot of waiting to do.

A Parent’s Survival Guide to staying in hospital

I have lots of experience of extended stays in hospital, but the proposed week ahead with M felt more daunting than normal.  It might have had something to do with his very obvious nerves and reluctance to go, but I worried about how I was going to keep him entertained and comfortable for a week filled with heavy-duty bowel prep, anaesthetic and scopes.  I turned once again to the support of FABED, where I knew a number of parents had experience of, not only an extended stay at GOSH, but on Kingfisher ward too, and asked them for their suggestions of essential things to take with us.

So, it is with many, many heartfelt thanks to those wonderful individuals, we survived the week and I’ve put together a list of the “must-haves” for a hospital stay:

20131020_205620

  • A supply of easy-to-store snacks and squash for both parents and child – remember that your child might be on a restricted diet in preparation for their procedure, so be flexible and prepared to nip out to a local supermarket to add to your stock if needs be 
  • I-pad/tablet/DS plus games AND chargers – these were invaluable as M was confined to bed for a lot of the week.  I loaded a number of his favourite audio books on to my tablet, which gave M something to listen to at bedtime.  A crucial part of his regular night-time routine
  • Favourite books – a mix of something your child can look at on their own as well as old favourites that you both can share
  • Favourite toy/comforter – M’s cat travelled with us as always and went almost everywhere with M.  It’s not so much that M struggles to sleep without him, but he’s a source of comfort when uncomfortable medical procedures have to be endured

    Cat ready in his scrubs for the week ahead

    Cat ready in his scrubs for the week ahead

  • Colouring In/Stickers/Craft activities – anything that can keep them occupied whilst they’re in bed.  A friend suggested we could start on our Christmas cards whilst there – I just wish I’d had time to sort that one out as it would have been something we could have begun with no pressure of having to complete it when M had had enough
  • School-work – ask if your child’s school is prepared to send some work for them to do during their stay.  Needless to say, M was extremely reluctant to do any during the week, but we persevered and read some books as well as practised some spellings ready for a test on his return

    A little reading and some spellings to learn

    A little reading and some spellings to learn

  • Headphones/ear-plugs – if you find it difficult to sleep in a quietly busy location, then these will be invaluable to making sure you get some rest.  We bought a set of headphones for M, which were a real life-saver during the week.  He was able to listen to the TV and audio books without disturbing anyone else and that really helped him to settle to sleep each night
  • Mini lego sets/action figures – M has recently enjoyed playing with some plastic soldiers that he “won” when we were last on holiday in Canada.  For this stay, I bought a pack of them which included tanks, planes, helicopters and bunkers – hours of fun that constantly changed and that could be put away quickly too
    M and Daddy putting together some new Star Wars Lego

    M and Daddy putting together some new Star Wars Lego

     

  • Top trumps or travel games – they’re small, easy to pack and entertaining for at least 5 minutes!  We could play a game and then pack it away as soon as M wanted 20131020_184801
Courtesy of waitrose.com

Courtesy of waitrose.com

  • Clothes – Enough clothes and sets of pyjamas to see you through the week.  As M was having bowel prep, I packed masses of underwear as well as pairs of pjs – it still wasn’t enough, but got me through 24hours without too much stress
  • Warm jumper – for both the child and the parent for when the nights get chilly
  • Washing powder/gel – we went through M’s clothes far quicker than I had anticipated.  Fortunately GOSH has a Patients laundry room with 2 washing machines and 2 tumble dryers.  I was able to run a load through both every evening at a cost of no more than the washing powder to clean the clothes
  • Slippers – I really, really wish I’d thought of taking slippers with us for both me and M.  I didn’t want to wear my shoes all the time, but wasn’t always comfortable to walk around in nothing more than my socks
  • Blanket/pillow – it’s nice to have that extra bit of comfort that reminds you and your child of home.  M had 2 blankets with him, which he curled up with every night whilst giving Cat a much needed cuddle
  • Treats for Mum (or Dad!) – hand cream, lip balm, comfy socks, soft loo roll were among the suggestions and all were invaluable to me for the week

And then. my 3 favourite suggestions, that brought a smile to my face and were in much demand during our week at GOSH:

  • Gin in a tin
  • A sense of humour
  • and a LOT of patience!
Courtesy of tesco.com

Courtesy of tesco.com

Whirlwind week

Having written my last blog about finally making the big decision to request that M has more scopes done, we settled in to what we assumed would be an inevitable wait for the appointment to be made.  Having been told 6-8 weeks, I studied the calendar and figured out that 6 weeks would be right in the middle of October half-term and, knowing that there was no chance that we could be that lucky,  assumed that instead we were looking at a date in the middle of November.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

A week after Mike had spoken to the registrar at GOSH, I received a call from the pre-admissions nurse, S, to talk through M’s notes and agree the arrangements for the scopes.  I was reassured to learn that M’s notes clearly state that there is a problem with him coming round from the anaesthetic and S suggested that, as a precaution, he be admitted to Kingfisher Ward for 2 nights to allow close monitoring as he recovered.  We discussed the possibility of a pre-med, which is supposed to calm the child before they are given the anaesthetic.  She felt this might lessen his reaction, though I was warned that there is a risk that it can have the opposite effect and might make him more aggressive.  We agreed that I am open to him taking it, but will discuss it fully with the Consultant Anaesthetist the day before.

However, not unusually when it comes to M, there have been some added complications due to the chronic constipation and impaction he had over the summer. GOSH wanted to admit him for a week into our local hospital to have a fairly heavy bowel prep done – they need to monitor him to ensure he doesn’t get dehydrated plus insert a NG-tube to give him the meds as it seems unlikely that he’s going to be co-operative about taking 4 litres of a “vile-tasting laxative” (the words of the medical staff, not me!).

Mum had some holidays booked during the 6-8 weeks and I had my fingers crossed that the dates wouldn’t clash as G would be staying with her whilst Mike and I stayed up in London with M.  S confirmed that she thought the appointment would most likely be in mid-November and that the admissions team would call me within the week to confirm a date.  All seemed to be going to plan and I informed both school and work that the appointment would be coming up and that I would let them know as soon as I had a date.

And then last week, the whirlwind hit.  Hold on to your hats, this could be a bumpy ride.

Courtesy of m.flikie.com

Courtesy of m.flikie.com

Friday afternoon 2.30pm – Phone-call from GOSH to say that the proposed date has suddenly become, not 6 weeks away, but rather the week after next, just 10 days notice for all concerned.  No time to confirm what the position with our local hospital was, that will have to wait until Monday.  Let school know that M will be away for the week and ask if they could organise some work for him whilst he’s there – I know, mean Mummy!

Weekend – Confirm arrangements for G.  Mum not away that week, so G can stay with her and stick to her normal routine as much as possible

Monday 10.45am   Speak again to S, the pre-admissions nurse, who has yet to phone our local hospital, but who has a doctor on hand at GOSH to argue our case.  Given M is supposed to be admitted there on Wednesday, it all feels a bit tight and needless to say, stress-levels are slowly rising.  Suddenly, the 3 days off work and school have become over a week, but still just about manageable as I can do the school-run and so on with G.

Monday 1pm – GOSH doctor calls to confirm some further bits of information including the name of our local consultant (we don’t have one) and which ward M is normally admitted to locally (he’s not).  Assured this won’t be a problem and that either she or the local hospital will ring later to confirm when I need to get him there.

Monday 6pm – Phone-call from S to say that the local hospital has refused to take him and so we’ve got to move to Plan B – getting him admitted into GOSH to have it done instead. No idea whether they’ll have a bed for him or when they want to admit him. They need to review the abdominal x-rays done over the summer (by the local hospital!) to see whether he needs to be in the full week or not.  Someone will call tomorrow to let me know.

Tuesday 9.30am – Wondering what time GOSH will call and hoping that it’s good news. still waiting

Tuesday 12.45pm – Still waiting to hear

Tuesday 3.30pm – Still waiting, but hoping they don’t phone whilst I’m on the school-run.

Tuesday 4pm – Following call from Mike to see if I’ve heard anything – doesn’t he know I’d have rung him if I had? – decide to call and leave a message for the admissions nurse.  She is amazingly, wonderfully supportive and has reassured me that she will come up with a Plan C if needs be, though goodness only knows what that will be!

Tuesday 5.15pm – ARRRRGGGHHHH!!!  Appointment cancelled as GOSH can’t find him a bed for the week.  Profuse apologies from S, who tells me she’s turning grey trying to organise it for us, but that admissions will phone me tomorrow to set up a new date.  They’re not going to bother with the local hospital at all, I’m guessing they’ve been unco-operative which fits our experience of them, and instead will do it all at GOSH.

Tuesday 6.30pm – You really, really couldn’t make this stuff up!  Phone-call from S, as I’m en-route to taking G to her gymnastics lesson, to say that they’ve found him a bed for next week and so it’s all back on.  Can’t confirm what time we’ll need to be there on Monday, so I’m now planning on M and I travelling to London on Sunday.  She will phone tomorrow to confirm all details.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

Wednesday 11.45am – Hurrah!  Get the champagne flowing, we have lift off.  Final confirmation that M will definitely be in from Monday 10am, no ifs, buts or maybes left.  S has been a star and has promised to come visit us once he’s on Kingfisher ward on Monday.  I can’t wait to meet her and say a huge thanks for persevering with getting this all sorted.

Now, I’m off to work out what we’ll need and how we’re getting to London next week.

Big decisions

Courtesy of stuff.co.nz

Courtesy of stuff.co.nz

We’ve recently had to make a decision about where we’re headed with M’s health and what tests, if any, we want to push GOSH to consider.

We’ve had a mixed success with the Movicol as he has started using the toilet successfully again and we’ve been able to banish the pull-ups to the bottom of the cupboard for the next time there’s a “just in case” situation.  However, M now seems to be fluctuating between constipation and chronic diarrhoea and we’ve reduced his dose down to 3 sachets a day as the 4 were really proving to be too much for his system. We’ve tentatively settled there, even though it doesn’t yet feel 100% right.

The positive and best thing is that he’s conquered the toileting struggles.  These had been a major source of distress over the summer and it’s nice to back on an even keel.  M feels as if he’s more in control of his body – well as much as he can be whilst dealing with the ongoing battle with the symptoms of the EGID – and he’s really happy in school.  What’s more, school have been working hard at putting a medical care plan in place for him to deal with the changing nature of his EGID and his medicines, which means that we feel confident that they’re taking the situation seriously and will support him during the school day.

Courtesy of warriorfitness.org

Courtesy of warriorfitness.org

BUT – and you all knew that was coming didn’t you? – I’m still feeling unsettled about his over-all health and have a feeling that we’re not really dealing with the root cause of the problem. Despite some days when it appears he could eat for Britain, his appetite is down and his lunch-box is emptier than ever.  He’s beginning to object more to taking his daily medicines and there’s been numerous mornings recently when I’ve held my sobbing child on my lap and had to coax him to take the full implement prescribed.

His sleep patterns are off once again and I’ve lost count of how many mornings I’ve woken up to find a small limpet-like child clinging to me and stealing the duvet from my back.  Last night, I disappeared into my bed at 11.20pm, having found M still avidly reading his atlas and discovering new and interesting facts to share with me.  It has to be said that a lot of the sleep problems appear to be related to his emotional and psychological health as when Mike came upstairs just 10 minutes later, M was flat out and fast asleep in his own bed.  It’s as if he needs to be reassured that Mummy is nearby and once that’s clear, then all is well with the world and he can let himself drift off to sleep.

He’s emotional and tired and fed-up; and, to be honest, so are we.  We’re working hard at remembering and focussing on the positives, but sometimes that feels like a step too far. The constant barrage of frustrated behaviour, food management, pain relief, sleeplessness, appointments. emails and phone-calls have drained me completely and I just felt unable to face another discussion with yet another faceless registrar at GOSH, who has little or no knowledge of M and needs me to bring them up to speed before I even get to the point of the phone-call.

So, at the beginning of the week, I asked Mike to speak to GOSH and put forward our case for another set of scopes.  It’s been nearly 2 years since the last ones were done and we felt it was high time he was checked again.  We’ve got no real answers as to whether all the medicines are 1) necessary or 2) working, the limited diet is a strain and this past week we seem to have added raspberries to the list of forbidden foods.  This might seem like an easy decision to make, something of a no-brainer, but, as some of you may remember from my previous blog posts, M suffers from an allergic reaction to the anaesthetic. It’s been a big decision to make to put him through an ordeal that we hope might provide some answers, but that we know will definitely cause him pain.

rainbow

All I can say is that someone must have been smiling down on Mike on Monday.  I’d warned him that his initial phone-call would only get us put on the list and that if he was lucky he’d speak to a registrar on Tuesday or maybe Wednesday.  I fully expected that we’d then have to wait for M’s consultant, Dr H, to be consulted and that we might get a final answer by the end of the week.  If he argued our case well enough, then there was a possibility we’d get a yes, but I prepared him for battle.  So imagine my surprise at getting a text message at 3.45pm on the same day saying that not only had the registrar been spoken to, but they had agreed to recommend scopes and, what was more, Dr H had been contacted, given her agreement and scopes would be scheduled for 6-8 weeks time.

The GOSH gastro team have expressed the same concerns about M’s progress as us and made making that big decision for more investigations much easier than I could ever have hoped. So all we need to do now is wait for the appointment date to be set and it’ll be full steam ahead.

D-day

surgery

As we head up to London today for yet another appointment at GOSH, I thought I’d complete the story started in my last blog.

D-day had finally arrived. We got up, washed, dressed and packed up our bags before heading over the road to the ward for M’s scopes. We had a lot of hope pinned to these simple tests and both believed that we would get some answers once they had been done.

When your child faces surgery of any kind, as a parent you are understandably nervous. The medical team at GOSH did their best to put us at ease and to reassure us that all would be well whilst M was being examined. My biggest concern was the anaesthetic. M had broken his left arm in 4 places when he was 4 and had had to have 2 operations to put it back together. Both times he had experienced a noticeable reaction to the anaesthetic used with symptoms of a high temperature, hallucinations and thrashing about as he came round from it. The second time had been worse than the first and I was concerned about how he would react this third time as I had been warned that his reaction may become more severe each time he had to undergo anesthesia. His consultant and the anesthetist talked this over with us and reassured me that they would keep an eye on him.

We went with him when he was given the anaesthetic and this experience hit Mike particularly hard. On both of the previous occasions, only one parent had been allowed to accompany M into the prep room, so I had “been there and done it” before. The sight of M chatting away one moment and drifting to sleep with his eyes rolling back in his head the next, reduced Mike to stunned silence and to something of an emotional wreck. We returned to the waiting area, where the nurse advised us that it would all be over in about 30 minutes, so enough time to go and get a coffee at the nearby coffee shop.

Taking note of my need for a sweet and caffeinated beverage (Vanilla latte!) and his own for some fresh air , Mike and I wandered out into the winter weather and down the street. Neither of us wanted to linger, so we grabbed a coffee to go and hurried back to the waiting room. What happened next was every parent’s nightmare. M did not come out of his surgery within half an hour, or indeed within an hour. After over an hour of anxious waiting and quizzing of the nursing staff, we were finally ushered into the recovery room to see our boy.

The operation had not gone as smoothly as hoped because of the state of M’s insides. The colonscopy had gone well, but when they inserted the tube for his endoscopy, they discovered that his intestines had been badly damaged by the as yet undiagnosed condition and he had bled heavily as they tried to examine and take biopsies for testing. In the end, they had done what they could and had left it that. His consultant was confident that she knew what the problem was, even with an incomplete examination done, but she wanted to wait for the results of the biopsies before confirming her diagnosis.

The original plan had been that M would come round from the anaesthetic, have a small bite to eat, use the toilet and then be discharged by lunch-time. The extended length of the operation and then the extreme reaction to the anaesthetic meant that we’d be lucky if we got out by dinner. Fortunately, Mike and I had anticipated this turn of events, well the reaction bit at least, and had sensibly booked a later train to take us back home.

I dealt with the thrashing, the biting, the uncontrollable sobbing and the screaming as the anaesthetic passed through M’s tiny body, until finally he fell into a fitful sleep. We survived the departure of those children who had been scoped after him and the arrival of those for the afternoon list for theatre. We manoeuvred ourselves, M’s bed and our bags away from the main recovery room to the “spare machinery” room as they needed the bed space for those new patients. And we appreciated the drinks and sandwiches they provided for us and for M when he eventually woke up completely.

As the consultant left at the end of her day, we were finally told that M was going to be discharged and we left GOSH approximately 10 hours after we’d entered it that very morning. Mike flagged down a passing black cab and the cabbie helped us in with our luggage as I carried our suffering and sleepy lad in and onto my lap. We had acquired some additional soft toys on our trip, well every boy needs a gruffalo and mouse to see them through surgery, as well as a GOSH bear for G as a present from our stay away from home and we needed extra arms to manage those without losing them along the way.

Getting onto the train at Paddington felt like no mean feat, but we were reassured and hopeful by our consultant’s assurances that she knew at last what we were dealing with and prepared for our return visit less than a month later.