Tag Archives: Great Ormond Street Hospital

Eosinophilic Awareness Week 18th-24th May 2014

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This week I’m delighted to welcome Kate from The Recipe Resource as my guest blogger. Her blog was set up to support those catering for multiple food allergies, particularly in children and Kate is a fellow EGID Mum, who I’ve been privileged to meet through the fantastic FABED.  I was going to write a post to tell you all about Eosinophilic Awareness Week, but found Kate had already done an amazing job on her own blog and she kindly agreed to let me share it with you all:

 

18th-24th May 2014 is Eosinophilic Awareness Week.  Read about EGID here

Gastro research is drastically UNDER FUNDED.  It is not “glamorous” and rarely on the radar for celebrities and focus groups, and rarely attracts public interest unlike cardiac care and cancer research.  Gastro conditions are badly neglected in the UK when it comes to research funding allocation, but without research treatment and outcomes are not likely to improve much.

Approximately 1% of the total amount of medical research funding available in the UK can be accessed for Gastro research.  There are currently no listed projects specifically for Eosinophilic Disorders on the National Research database.  GOSH are running a Gastro Research Project that will include related conditions/problems.  Alarmingly, children with allergic gut conditions are reaching epidemic proportions according to GOSH.

No one knows why the UK has the highest incidence for Allergy.  I went to Westmnister to attend the All Party Group for Allergy in October 2013 and heard how in the 19th Century, a study into Hay Fever took two decades as it was so rare and there were insufficient people to include in the study.  Today it is incredibly common.  The UK tops the league table in the incidence of allergy in its population, with Australia second – which is interesting as their population obviously share a similar root.  Allergic gut conditions are becoming common and hugely problematic for NHS paediatric services and Eosinophilic Disease is a specific subset of this group.

FABED is the main UK charity supporting families with members (adult and children) who suffer from eosinophilic disease.

FABED

FABED are UK partners supporting the United States Eosinophilic Awareness Week.  This is coordinated by APFED.  Two years ago they made this video to promote awareness.

Read more about Eosinophilic Diseases here.

During Eosinophilic Awareness Week, do something to raise awareness.  Tell someone about EGID and the appalling lack of funding for gastrointestinal disorders in the UK.

 

This blog was first posted on May 9th 2014 at The Recipe Resource here

Our birthday boy

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Over the past few days, we’ve been celebrating young Master M’s 8th birthday.  It’s hard to believe that it’s been that long since he first crashed into our world and whilst the time hasn’t been easy, it certainly has flown past fast.  The last 8 years have been filled with a lot of laughs and smiles and it’s exciting to see just how our “little bean” is growing up.  Obviously, we’ve had a lot of health worries along the way – this blog wouldn’t exist without them – but those haven’t overshadowed the joy and good times of having M as part of our family.

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M has become a little boy with a big personality.  Like most other boys of his age, he loves everything Lego, Star Wars and Angry Birds and is a keen member of our local under-8s football team, where he can be found most Saturdays running around the pitch and even occasionally kicking the football.  He loves discovering new things and although he’s not the most academic of children, his passion for new facts, knowledge of the world and probing questions have been flummoxing his teachers for years.  M does struggle due to his dyslexia and dyspraxia, but the strides he has made since we got the diagnosis last year are amazing and he never lets them stop him being an active participant in class. He enjoys school now more than I ever thought possible and is keen to get there each morning to spend the day with his friends.

DSC02717He adores his big sister and even though he spends most of his spare time planning new ways to wind her up, he will be the first to leap to her defense or comfort her when she’s upset.  He will go off to search for a scrap of her “rag” when she’s in tears, though he will also hide it from her when he’s in one of “those” moods.  They love nothing more than playing together in the garden and enjoyed most of the weekend’s sun by washing my car with M’s brand new super-soaker.

P1010012Perhaps more unusual is his flair for all things theatrical.  M has never been backwards in coming forwards and I have photos of him stepping up to perform karaoke age 4.  He loves to perform and is always looking for the next opportunity to do so.  His current favourite musical is “Singing in the Rain”, though he’d probably also mention “Lion King”, “Matilda” and “Oliver!” in no particular order.  M has a dedicated dressing-up wardrobe and has fancy dress to meet every occasion.  No matter what character you’re looking for: be it “Odlaw” from Where’s Wally, “Bert” the chimney sweep from “Mary Poppins” or the “Ringmaster” from “Ninja Meerkats”; I can guarantee that M will have already been there and worn that!

When it comes to coping with his EGID and his diet, M is a trooper.  He takes his medicines with the minimum of fuss and accepts the food restraints with relative good humour.  He’s not perfect by any stretch of the imagination, far from it, and really struggles at times with frustration and anger that this is his lot in life.  Yet he nearly always bounces back and keeps going with a positive attitude.  The latest challenge of no potatoes has been one of the hardest M has had to face and he has really found it difficult to accept that he might have to avoid them longer term; but even he has had to agree that things have improved since we whipped them out of mealtimes and is now hoping that our next GOSH appointment will bring a food trial instead.

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To celebrate in true style, I once again attempted to bake the double and created 2 cakes for M to enjoy – one for our family dinner and one for him to share with his friends at his party. The first he chose from my cupcake decorating book and the second was inspired by G and M’s current passion for all things “Despicable Me”.  It took two long and extremely late nights, but I achieved my goal, was pleased with the results and, more importantly, so was the birthday boy himself.

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Local update

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update-timeYou may remember that back in December, M was referred on an urgent referral to our local hospital based on the advice of GOSH.  He was suffering from chronic constipation, was in considerable pain and was losing weight as his appetite decreased.  Sadly, our local hospital felt it was unable to admit or treat M and instead our only option was to treat him at home, using a strong laxative and bucket-loads of patience as he struggled to recover his health. Our urgent referral resulted in the offer of an appointment with a general paediatrician in February, nearly 12 weeks after the referral was originally made.  We thought long and hard about whether we wanted to take up this appointment or not, given our previous experience with our local hospital, but we knew that local input could make a big difference to all our lives and felt that this could be our way into the local system.

apptFebruary’s appointment arrived quicker than we could have imagined and we went along with an attitude of “hoping for the best, but expecting the worst”.  The symptoms that M was suffering back before Christmas have disappeared and we have had the challenge of changing his diet and his medicines again in an attempt to reach a status quo with the EGID. What we hoped for was a local doctor who would listen to our concerns and who would offer us the helping hand we so desperately need.  We wanted a local doctor who could point us in the right direction at the hospital and would support our search for shared care between our local hospital and GOSH for M.

Instead we got a doctor who, through their less-than-professional manner, vocal criticisms of both our GP and GOSH and obvious impatience, left us feeling let down once again.  They belittled our decision to seek a second opinion when the local hospital had let us down 3 years ago and were unimpressed that we had our own point of view concerning the care given to M.  They reluctantly agreed to refer us on to the gastro team at the hospital, but made it clear that they believed it highly unlikely any of the gastro consultants would willingly take M on a shared care basis with GOSH.  Mike and I weren’t surprised, but we were disappointed that this consultant chose to make their opinions known so clearly in front of our impressionable and sensitive 7 year old.

complaintNeedless to say, we are not letting things drop there.  We have written a letter of complaint to our local hospital and are now waiting for their response to our concerns.  I am writing to our MP to make him aware of how badly M is being let down health-wise locally, to see if he will get involved on our behalf.  We will persist with the onward referral to one of the gastro consultants because we remain strong in our belief that shared care between our local hospital and GOSH is something M needs;  AND we will continue to fight M’s corner to make sure that he is put first and gets the support he needs.

“Nothing can hold us back”

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This week is “Feeding Tube Awareness Week” and a great opportunity to raise awareness and garner support for those brave children and young people who are currently living with a tube to provide essential nutrition.  Their motto for the week is “Nothing can hold us back” and for many a feeding tube allows them to take precious steps forward.  There are a number of different feeding tubes that can be used: NG-tubes, NJ-tubes and TPN to name just a few, and you can find out more information about all of these from The Feeding Tube Awareness Foundation here.  The reasons for a feeding tube are even more varied then the number of tubes available and can include premature birth, EGID, Cerebral Palsy and over 200 other conditions and diseases.

As well as the initial trauma of facing the decision to start your child on tube-feeding and the challenge of placing the tube, families then have to learn all about giving feeds, looking after the tubes, replacing them when necessary and how to deal with the little complications that can make a big difference.  The prospect of tube-feeding can be a frightening one, but these children are able to go to school, play and participate in after-school activities alongside their peers with the right support given by trained medical staff, friends and family members.

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Ms first tube

Whilst our journey so far with M has been tough and continues to throw new challenges at us from time to time, this is one thing that so far we have not had to face.  M has had feeding tubes twice – once when he was first born so prematurely at 33 weeks and secondly, for just a week back in October, when he was admitted to GOSH.  As I recounted then, it took a while for my brave boy to become accustomed to it and to stop worrying that it might fall out at any moment, but he did.  We know that we are extremely lucky as there are a number of EGID children out there who are dependent on a feeding tube to give them the daily nutrition they need.

October 2013 and another tube

October 2013 and another tube

The decision to start your child on such a path is a difficult one for any parent to make and there are no guarantees as to just how long that tube might be in place. At the moment some of our wonderful FABED friends are surviving life with a feeding tube, some have finally managed to say goodbye to that tube and others are contemplating whether a tube may be the next step for their child.  To all those families, this week is for you and about you and the support and understanding you all deserve.

You can read more first-hand experiences here:

New year, New plan

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The first week of 2014 and our first visit of the new year to London and GOSH for a consultation with M’s gastro team.  Mike and I had our list of queries drawn up and were determined not to leave without some answers.  Topping the list were our concerns as to why M has been struggling so much with chronic constipation since the beginning of last summer.  It seems that no sooner have we managed to get his system cleared out, than the problems start all over again and nobody seems able to explain why this is happening in such a relentless manner.  My meeting with the wonderful local Bowel and Bladder clinic had given us a proposed plan to follow and I was keen to see if GOSH would jump on board.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

Another on-going worry has been the restricted diet and number of medicines that M is taking and is one that his consultant has shared, especially as he is still symptomatic, which is the worst of all worlds.  We work hard with M to keep him going and stick to the daily grind, but he shows more and more reluctance to do so and sometimes the battle is just a step too far for us all.  I was keen to know if there was any possibility that we could remove one or two of his 7 daily medicines as we had discussed at our last proper appointment back in May.

Despite his weight loss in October whilst admitted to GOSH, and a further loss during December, M has managed to gain some weight in the last 12 months and is still creeping along his centile line, which keeps the medics happy.  This visit’s registrar was pleased to see that he had gained in both height and weight, though he mentioned that he would be happier if M could gain a little more weight in the coming months; a difficult feat when your child eats little other than “thin air” as M himself describes it.  We discussed at length the experiences and the numerous phone-calls that I’ve made over the last 8 months.  He even agreed that the current situation is less than ideal and supported, in principle, our tentative query as to whether we could drop a medicine or 2.

Courtesy of newharmonywellness.com

Courtesy of newharmonywellness.com

BUT – and admit it, you could sense that was coming, couldn’t you? – we can’t lose a medicine just yet.  Due to M’s new symptoms, the constant bowel problems swinging between chronic constipation and incessant diarrhoea and the general ill-health he’s been dealing with since the summer, we instead have to introduce new medicines to see if we can get a handle on the situation.  We’ve now got 2 more to add to the daily regime:  Senokot, which is a stimulant laxative, to help resolve the constipation issue, and Lansoprazole, a PPI to deal with the reflux that we’ve only recently learned M has been living with.

The problem with new medicines is that we can’t stop any of the old ones until we see if there is any improvement in his condition.  If we see a change for the better, we need to be certain that it is the new medication that is helping, an issue that would quickly become muddied if we took out any old medicines alongside starting new ones.  So, for the next 3 months until our return visit to GOSH, M will be on 9 medicines daily and already he has proved himself to be a real little trooper in his approach to it all.  I don’t know that I would be so keen to take so much every day, especially when there are no obvious outward signs that anything is making everything better, but he remains positive and determined to beat this condition and not let it rule his life.

We do have one other thing to do over the next 8 weeks and this resulted from the follow-up conversation with M’s dietitian.  She felt that we needed to exclude a couple more foods from M’s diet to try and reduce his symptoms.  We agreed to tackle the 2 that he has complained about when suffering from reflux.  His description of them making his throat feel as if “…someone has a pin and is pricking my throat and running it down the length of it..” as he swallowed had sounded the alarm with me and the dietitian agreed.  potatoesSo, for the next 8 weeks we are now experimenting with life without potatoes and raisins as well as the already excluded gluten, wheat, dairy, soya, egg and raspberries.  Fortunately, M almost always prefers to eat sweet potatoes to the humble spud and so I’m hopeful that, for the most-part, this won’t prove to be too difficult a challenge for us.

The visit to GOSH wasn’t quite as we’d hoped.  We’d gone with the dreams of reducing his medicines down to 5 or 6 and came back with the reality of 9 daily medicines and an even more restricted diet.  It’s hard to remain positive in the light of such a change, but we continue to strive towards a symptom-free M and will do whatever it takes to get him to that position.

Eating my words

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For some time now, we’ve been seeking some emotional support for M as he struggles to come to terms with his condition and the impact of a restricted diet and the associated health issues on his day-to-day living.  As the result of a GOSH recommendation, we sought a referral to our local CAMHS service to see if they could offer any counselling to M.  We also hoped that we would have access to some family support as we all find it difficult at times, G especially, as she deals with her own reactions as well as M’s mood-swings.

Courtesy of connectsociety.org

Courtesy of connectsociety.org

Sadly, our experience of CAMHS has been less than favourable.  The worker we saw had not read M’s notes, didn’t understand why we had gone to GOSH for treatment and had no idea that he had been diagnosed with a chronic bowel condition.  She talked about using sticker charts to encourage him to use the toilet and failed to recognise that, in M’s case, it wasn’t that he wouldn’t use the toilet, but rather that he couldn’t.  At our last meeting, Mike and I sat in disbelief for nearly an hour and a half whilst she repeated her theory that a reward system would be the answer to all our woes; and our jaws hit the ground when our repeated comments about his “diagnosed chronic bowel condition” finally sunk in and she pondered whether maybe she would benefit from taking a look at the letters written by his consultant from GOSH.

ticklistIn the letter that followed, she discharged him from her care and suggested that we instead got a referral to our local NHS Bowel and Bladder clinic for their input.  I was unsurprisingly sceptical, having spent some time at one when G was suffering from her own bowel problems a few years ago, and feared that the ubiquitous zticker chart would form the crux of their treatment plan.  However, I have long since come to the conclusion that the only way to get the help that we need, is to agree to whatever steps the health professional concerned recommends and tick those boxes to prove that we really are taking the situation seriously.

And so this past week saw us attending the local Continence clinic, which runs once a month in our GP’s surgery.  I was brutally honest with the nurse we met with, T, telling her within minutes of sitting down that I was not expecting much to come from our meeting.  I apologised for my negative attitude, but admitted that I felt I needed to be honest, so that she understood the position we were starting from.  At this point, my expectations were low – and about to be blown out of the water!

T was not phased by my comment, but instead admitted that she too was uncertain whether she could help M or not, but having read his notes thoroughly and all the letters from GOSH, she was keen to offer whatever help and support she could.  I knew at this point, that this meeting was going to be a very different one from that I had been anticipating and the following 45 minutes proved this to be very much the case.  We talked at length about M’s history, his diagnosis, the experiences over the last 9 months and the problems we have recently faced.

She expressed no surprise that M has been struggling emotionally to come to terms with his life as it now is and discussed with me about how isolated M must be feeling.  She pointed me back in the direction of the wonderful charity, Eric, which offers support and advice about childhood continence issues.  Not only do they have a telephone helpline manned by knowledgeable and sympathetic volunteers, but there is also an area specifically designed to enable children to discuss their toileting problems with others in the same situation should they want.  We had made extensive use of their website when struggling with G’s problems, though we had never thought to look at the children’s area with either G or M.

Most importantly, she suggested a change to M’s prescribed laxatives, but was insistent that I discussed her proposals with our gastro team at GOSH, who fortunately we were seeing the following day.  My biggest fear was that she would be as reluctant as our local hospital to get involved in M’s care and would not be willing to discuss him with GOSH – nothing could be further from the truth.  T reassured me that she would work alongside GOSH, and us, to make sure that M is getting the very best care and would help us make those little adjustments to his medicines that feel so complicated when I’m discussing them over the phone to London.

We still have an initial assessment with our local paediatric team in place for February, and it would be fantastic to have them on board too, but I no longer feel so dependent on that relationship working out this time round.  We have found instead, an even more local solution to our need for support and I have never been so glad to be left eating my words and being proved wrong.

Ringing in the New Year!

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As we count down to the New Year, I have to confess to being glad to saying goodbye to 2013.  The last 2 years have been tough for our family and I’m looking forward to a more positive 2014.  We’re still not at our ideal place with M, but we now have a diagnosis and every day sees us taking a step – be it forwards, backwards or just to tread water to stay where we are – and we’re hoping to make some real progress in the 12 months ahead.  All that being said, there have been many highlights of 2013, not least of which has been the adventure of starting this blog and below are a few of my favourite:

Courtesy of tesco.com
Garfield and I have a lot in common!
The George Cross awarded for “acts of the greatest heroism or of the most conspicuous courage “
Courtesy of kotaku.com
Poor Cat, all ready for surgery, but relegated to wait instead
Courtesy of carevan.org

Wishing you all a happy and peaceful 2014. May your new year wishes be fulfilled.

End of an Era

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For once this blog post isn’t about either G or M, but rather about me.  Yes, I know, a break from the norm, but there is a me outside of being Mummy and this week has been significant in that part of my life and I unashamedly want to share it.

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Yesterday signified the end of an era.  After 3 and a half years of working as the accountant for a small business, I said my goodbyes, cleared my desk and am off to pastures new.  I have loved almost every minute spent there, but the time has come to move on and Monday morning will see me stepping through the doors of a local and small accountancy practice and starting a new adventure as part of my career path.

The decision to make this change has been a difficult process and is partly influenced by the journey we are currently on with M and his health.  My experience has led me to contemplate just how lucky we have been with my employers, who have been unfailingly supportive of the numerous doctors appointments, trips to London, days off to be at home with a sick child and the resulting emotional strains as I’ve juggled home, health and work on a daily basis.  I know that there are many parents out there who are not as lucky as I have been and who have to fight to show their commitment to a job, whilst struggling to cope with the drama of a chronically ill child.

There has never be any question or doubt about my commitment to the role and, under these circumstances, I’m sure there are many who are wondering why I would leave such an understanding organisation and venture into the unknown.  The answer is simple.  I have been fantastically lucky to find a new employer who has firsthand experience of having a child at GOSH and understands that there are times when I’m just going to have to drop everything and leave.  Add into the equation the new proximity to home and school – I now have a 5-minute commute to the office in the morning, rather than the 25-minutes battle against the traffic or on the train – and a slightly shorter working week, which will give me the time to be at home to support both G and M as they need me right now, the decision really should have been an easy one.

tissues champagne                                        It’s been more of this………….and not so much of this.

However, it was with a heavy heart that I left my offices yesterday.  I have made some wonderful friends over the past 3 years and, for the first time ever, am leaving a job because it’s the right thing to do for our family and not because I am no longer happy there.  Their unwavering support and love as we set off on the steps that led us to GOSH, a diagnosis and an on-going battle to return M to good health has been invaluable and I will miss the cheerful banter and the numerous cups of tea that get me through each day.  So, for any of the “Donut Gang” who are out there and reading this, a big Thank you for the past 3 years and make sure you stay in touch!

Courtesy of dailybreadcafe.ca

Courtesy of dailybreadcafe.ca

Welcome to the House of Fun!

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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

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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!

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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.