Tag Archives: Conditions and Diseases

To whom it may concern

Dear Local Hospital

28 years ago, your specialists saved my life.

My family and I owe our gratitude to those skilled doctors who were on duty the night of my 9th birthday, when I was admitted perilously ill and closer to not making it through the night than my parents could have imagined. Their wonderful care brought me back from the brink as my Type 1 diabetes was diagnosed and they supported me for the next 11 years of my life. It is not ridiculous for me to say that I owe my life to you and had every confidence that when Mike and I started a family of our own, we could entrust the health of our children to your care.

2 and a half years ago, your consultants told me that there was nothing wrong with my son, other than a minor complaint he would grow out of in time. Your doctors left me questioning my instincts and made me feel that they viewed me as a neurotic mother. They even queried why we, as loving parents, would consider putting our child through an experience as horrendous as an endoscopy, when it was obviously not needed. Mike and I began to doubt our judgement and, at breaking point and in desperation, we took our child and walked away from your care.

Our wonderfully sympathetic GP listened and sent us to one of the top Children’s Hospitals in the world for a second opinion. At our very first appointment there, we were told that he was a very ill little boy, but that they could help. They have diagnosed a chronic condition that he will probably never outgrow, a condition that has changed his life. For 2 years, we have juggled our family’s lives to make the regular and necessary trips to London to search for answers and to work out how to return our son to better health.

Six months ago, our son was struggling with new symptoms and GOSH requested a test to rule out any infections in his system. A simple test that, due to its nature, needed to be carried out locally and our GP readily agreed and sent off the sample with the appropriate paperwork. Within days, you replied that you wouldn’t do the test due to funding and suggested that if GOSH wanted the test done, then we should travel to London for them to carry it out. It was with a sinking heart that I accepted this decision and vowed silently that I would never willingly bother your hospital again.

Five months ago, he needed urgent abdominal x-rays and I reluctantly agreed to attempt a referral to your hospital for these. To my surprise, you agreed and once again I was reminded of the competence and compassion of the dedicated people who work there as they cheerfully showed my inquisitive child the x-rays of his poorly tummy. A tiny seed of hope began to sprout – maybe we could develop a relationship with you that would put my son first.

Two months ago, we were prepared to give you another go. GOSH wanted him to be admitted to you for the extensive bowel prep he needed prior to his scopes, due to the chronic constipation that had been identified over the summer. I was willing to see if things had improved, now that we had the “big guns” at GOSH involved. You let us down again. I don’t know fully the conversation that happened between your gastro team and the team at GOSH, but you refused to admit him and instead we had to face the upheaval of a week away from home to make sure he got the care he needed. That tiny seed of hope had obviously been trampled on thorny ground.

A couple of weeks ago, I noted anxiously that he was showing some signs of chronic constipation once again and our best efforts were woefully ineffective. GOSH advised that he needed to be admitted before Christmas for another bout of heavy duty bowel preparation to clear his system and once again suggested we tried you. Once again, our stalwart GP sent an urgent referral across to you and once again, you refused to take him. This time you insisted that you wouldn’t even consider a referral sanctioned by GOSH unless he was examined by a GP first, so we did as asked, got him examined and re-sent the referral.

We are now nearly 3 weeks on and the best you can offer is an initial assessment in February 2014. If this is your response to an urgent referral, I dread to think how long a child might need to wait for a so-called non-urgent one. Our GP has been fantastic and can’t do enough to support us. Their admin staff are searching high and low for any possible alternatives for us and making phone-calls that are definitely above and beyond their call of duty.

You have been fantastically dreadful and are refusing to budge on your decision.

I understand that you are busy. I understand that your beds are full of other sick children. I understand that you feel you don’t know my child any more and are reluctant to offer him treatment based on the recommendation of other health professionals.

BUT, you are failing a 7 year old child.

A child who is in constant pain that waxes and wanes to an increasing level every day. A child who wakes in the night crying because of the pain in his tummy. A child who needs medical intervention now, so that the problems don’t multiply and escalate in the lead up to Christmas. A child who is at emotional breaking point and desperately needs some help. A child who doesn’t understand why I can’t make him better and why you won’t help.

GOSH is helping as best they can and is working alongside our GP to prescribe a series of stronger laxatives for us to use safely at home. The problem is that we won’t know for sure whether they’ve worked or not and will just have to keep trying during the festive season. What’s more we’re back at GOSH in the New Year, the best part of 6 weeks before you’ll see him and I’m left wondering what to do for best.

We’ve been told that we need a local paediatrician to be involved in his care. Someone we can liaise with when things get this bad and who can help us get the local care that our child needs. I’m caught between a rock and a hard place. I don’t trust that you will give him that help and support and yet we can’t be dependent on continual telephone consultations, especially when we know local input would be less of a strain on us all. Frustratingly, I don’t have options. I know just how excellent you can be and yet the last few years have been one disappointment after another. The best alternative to you is in Wales and we can’t get there because of NHS funding policies. We’re caught in a political trap, where everything comes down to money, or the lack of it, and postcodes; and everyone loses sight of the most important thing:

That at the centre of it all there’s a 7 year old boy who just needs someone to help him feel better.

A Pizza Express birthday

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The first day of December heralds the start of the busy season for most, but an especially hectic time in our household. As well as the much-awaited day itself with all the associated celebrations at school, work, choir and church, we also have to fit in a 10^th birthday and a wedding anniversary. This weekend we got the ball rolling in fine fashion with an early birthday celebration for G.

Whilst G is most definitely a December baby, this year other commitments near her birthday led to my decision to throw her party early and sneak it in at the end of November instead. The first discussion was about the format her party was going to take. G was keen to combine cooking or baking with a sleep-over. I was less keen. The prospect of organising a group of near 10 year-olds (and two 7 year-old boys) to prepare, cook and possibly decorate a selection of M-friendly foods lacked appeal. Add in M’s inability to settle and sleep at the moment and I could see that it was more likely that full-scale battle would break out, rather than the joyous birthday celebrations G had in mind.

Thanks to some wise words from Canadian friend F, I found the perfect solution – a pizza-making party at Pizza Express. Now I appreciate that throwing a pizza party for a child with wheat- and dairy-intolerances and her multiple food-allergy suffering younger brother sounds somewhat off the wall, but thanks to the gluten-free menu introduced by Pizza Express earlier this year, we knew it was a viable option. We discussed our requirements with our local restaurant and were reassured that both children could participate fully and work around their dietary restrictions.

The date was duly booked, invites sent, travel arrangements made and finally the day dawned. Following our prompt arrival at the restaurant, each child was given an apron and hat to don before their starters of garlic dough balls and a side salad were served. Thanks to the information provided by Pizza Express, I was fully equipped for all eventualities and the chef was able to lightly toast 4 slices of M-friendly bread, which was served with garlic butter that I had prepared at home.

Next the task of making the pizzas themselves. G, M and their friends were given a ball of pizza dough each and were then instructed in the art of rolling, pressing out and filling the pizza pans. The children had varying success with their pizza bases, but eventually, after a couple of false starts, everyone had a base to be proud of. They were then given a selection of toppings to add before their pizzas were baked in the ovens. G and M were able to take full part in this, preparing pizzas for Mike and me to enjoy.

Stretching and fitting the dough to the pan

Adding the GF tomato sauce to the base

Once these pizzas were ready to be cooked, G and M were then given the opportunity to make their own lunch. Our party host was fantastic and explained just how Pizza Express make sure that their GF options are kept safe from the risk of cross-contamination in their kitchens. The GF pizza bases are pre-made and kept in separate storage as is the GF tomato sauce for the base and they use different pizza pans to cook the GF pizzas, which are easily distinguished from the normal ones. I had brought our own supplies of grated goats’ cheese for G and chunks of Violife vegan cheese for M, which is both dairy- and soya-free.

G’s with goats’ cheese and ham and M’s with black olives and Violife cheese

We finished the meal with a small portion of ice-cream with various toppings they could add at their discretion. Once again I had been able to bring with me a tub of Booja-booja chocolate ice-cream for G and M to enjoy and was thrilled to discover that the Pizza Express toffee sauce was safe for them too as the party host had made the effort to check the detailed allergy listing for all their products and could reassure me that it was safe.

A game of “Pin the moustache on Paulo” entertained them whilst the pizzas were cooking

All the children had a wonderful time and we were hugely impressed by the attention to detail that PIzza Express makes to ensure that their allergy-friendly options remain safe, even down to serving G and M’s pizza on separate platters to once again ensure no cross-contamination occurred. It was a real treat to be able to offer a “normal” birthday experience to G and for them both to enjoy the birthday celebrations with their friends.

Our charity needs YOU!

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.

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.

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

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!

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

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

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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

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

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 “

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

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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:

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
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

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
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

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

Whirlwind week

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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

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

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.

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

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

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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

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.

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.

Play-date anyone?

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It is amazing how something so simple can make such a big difference to a small child.

As M started a new school this September and is still getting to know the children in his class, we decided to invite a new friend home for tea after school. M chose C, another child who’s new to the school. I ambushed his Mum a couple of weeks ago to broach the subject of whether he’d like to come home for a play, eventually got round to passing on my contact details and finally settled on a day.

Courtesy of gsapublishing.com

This Tuesday I left work promptly to make sure I was in the right place at the right time to pick up M, C and G. The weather held so they could all burn off their energy and excitement by bouncing on the trampoline and tearing around the paddock like wild things. I chuckled quietly to myself as I heard the 3 of them discussing the ghosts in our house and heard C promising that he would bring back his ghost-detector from home once he’d fixed it – a child with an imagination to match M’s, I thought. I fed them everything-free fish fingers, potato wedges and a variety of veggies determined by the preferences of each individual child. We even survived M having a soiling accident and successfully changed him without C being aware it had even happened.

Nothing particularly out-of-the-ordinary or revolutionary, you might be thinking and you’d be right. The bit that made all the difference came when C’s Mum came to pick him up.

“Thank you so much for having C home for tea,” she said, “he’s the happiest I’ve seen him since we made the move.” And then she uttered the magical words, “Would M like to come home to ours for a play-date next Tuesday after school?”

Before I’d even had a chance to reply, she continued “I can cook just plain chicken drumsticks with vegetables for them for tea, or you can pick him before tea if you’d prefer.”

This woman, who has swiftly become a new friend, had unwittingly just rocked my world. In the last 2 years, since we embarked on our free-from journey with M, he has been home to friends’ houses just twice. The prospect of feeding my food-intolerant child was too daunting to so many of the Mums I’d got to know during M’s first year of school that they just stopped inviting him back after school. One Mum had even told M three separate times that she’d talk to me about arranging a day and what he could eat, and then never bothered to make that effort. Needless to say, that was a friendship that quickly fizzled out as M couldn’t understand why the promised invite never came.

So, for someone who’d known us approximately 5 minutes to take M’s situation and tricky diet completely in her stride and willingly offer to have him home from school, has felt like a real blessing. We’ve got to iron out a couple of wrinkles that are playing on M’s mind – chiefly his medicines and the whole “what if I have an accident whilst I’m at C’s house Mummy” concern – but I’ve got those sussed and I think M is reassured that every eventuality is covered.

Which leaves my 7-year old eagerly anticipating the opportunity to fix the broken ghost-detector – “though I’m not entirely convinced he’s not just making the whole thing up Mummy” – and me as one happy Mummy.

*I’ve just found this article “I’m not neurotic, my kid has food allergy” which helps you understand even more about how important this sort of compassion can be to a family supporting a child with food allergies

7 years to diagnosis

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