Category Archives: Hospital

Breaking the curse

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Reaching today feels like something of a landmark moment. We’ve had our fingers crossed that we’d get to yesterday’s date without so much as a hiccup to stand in our way and we’ve not only reached it unscathed, but have surpassed it with no sign of looking back. Saturday was December 3rd and we were all feeling more than a little nervous about it. The date might not ring any bells with you, but in our household, hitting midnight on the 3rd at home felt like a huge achievement. For the last two years, that date has signalled the start of a hospital admission for M and we were desperate that history wouldn’t repeat itself for the 3rd year in a row. Of course, in both 2014 and 2015 we knew that the admissions were planned and it was just a case of waiting for a bed to be available for him, but nothing prepared us for the unlikely scene of déjà vu when the phone-call came summoning us to London once again, exactly one year to the day of the previous one.

There was no reason to think it would happen again, not least because there are no further admissions planned at GOSH and we had already told our local hospital that we wouldn’t even consider a December admission this year, but the fears of our “December 3rd curse” were there anyway. I’d like to say that the weekend passed without event, which is really what we would have preferred, but as ever in the 7Y2D household that isn’t quite the case. There have been unplanned hospital visits and unexpected procedures discussed for family members other than M over the last week, and the implications of those are still being mulled over as decisions have to be made and soon. However, most importantly, today is December 5th; M and G are at school, Mike and I are at work and that’s just the way it should be.

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Now we can start to enjoy Christmas!

Takeover Challenge 2016

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img_12651When it comes to thinking they know it all and can do it all better than the adults in their life, my kids are world champions. The frequency with which Mike is told that “Daddy, you just don’t understand..” is high and he often finds himself trying to defend his position to an irate 10 year-old, even on matters where he quite obviously has far more expertise than anyone else in the room – think anything building-related given his career as a chartered surveyor. There is a certain level of deference awarded to me, after all I’ve proved over and over again that Mummy knows everything there is to know and, besides which, she really isn’t someone you want to get on the wrong side of ever; but the opinion of just about every other adult is scrutinised carefully and often rejected on the basis that they just don’t understand either. M has some very strong opinions and would, and sometimes has, happily argued the case that the sky is green for hours, often with a reluctant truce having to be declared before World War III breaks out across the dinner table. As for G, well she has perfected the teenage eye-roll ahead of hitting her 13th birthday and it’s often accompanied by a surly shrug of her shoulders and a mumbled “Whatever” as she heads upstairs to the seclusion of her bedroom.

redevelopment-wed-2So, you can imagine my thoughts when G and M were invited to be a part of this year’s Takeover Challenge at Great Ormond Street Hospital through G’s involvement with the GOSH YPF. This is a fantastic project run during November by the Children’s Commissioner and sees organisations and businesses across the UK opening their doors and inviting children and young people to take over adult roles. The Challenge seeks to “…put children and young people in decision-making positions and encourages organisations and businesses to hear their views. Children gain an insight into the adult world and organisations benefit from a fresh perspective about their work.” Excitement has been building in our household for weeks as G and M looked forward to finding out more about how the hospital is run and last Wednesday couldn’t come soon enough for my two excited children. I was delighted for them to have this experience, but my true sympathies lay with those adults who would be brave enough to let this opinionated duo step into their shoes, even for a day.

The children were invited to take-over the Developmimg_12641ent and Property Services department as Director and Deputy Director for the day. The information they received in advance told them that they would have a “behind the scenes” tour of the hospital with opportunities to learn about the systems that help the hospital to run efficiently, including visiting the plant room with engineers, learning about the food ordering system and how the meals get to the children on ward and understanding more about how the hospital plans and designs spaces to be fun and interesting for the patients, their families and the staff. Ahead of the day itself, both G and M were asked to complete a profile to be shared with the Development team, explaining a little about why they were interested in this role as well as what their involvement with GOSH is. G had 2 key areas of interest – finding out how the kitchens cater for patients with food allergies and how new spaces and redevelopment work is done – whilst M was eager to see the plant and machinery that makes the hospital run and find out more about the technology in place.

img_12601Determined to dress for the occasion, M’s clothes were chosen the weekend before to make sure that everything he needed was washed and ironed, unlike his sister, who typically left everything to the last-minute and was then put out when her first couple of outfits were deemed unsuitable by me. Taking the challenge very seriously indeed, M solemnly told me that I needed to make sure he was in bed early on the Monday and Tuesday so that he could be well-rested and ready for a busy day. Our decision to head to London on the Tuesday night after a Year 6 meeting at his school slightly scuppered those plans and his night’s rest was then further disrupted by a 5am fire alarm in the hotel, something none of us appreciated. The further stress of the drive across London to make sure that we reached GOSH in time whilst being questioned constantly as to when we would arrive, tested my nerves thoroughly, though we did make it – by the skin of our teeth. The hurried unloading of G, M and me just around the corner so that we could dash to the main entrance by 10am as Mike went off to the park the car, was an unexpected drama I could really have done without.

However, the day itself was a huge success redevelopment-wed-14and we are still hearing snippets about it a week on. Whilst both children took over the same department, their mornings were filled with different activities to meet the interests they had already expressed in their completed profiles. M spent the morning with Development Director, Matthew Tulley, the highlights being exploring the roof of the hospital and learning more about CAD. That second activity earned the accolade that “CAD is rad!”, something I suspect will stick with the Development team for a long time. G headed in a different direction to learn more about different aspects of what this department does. She went with Deputy Director Stephanie Williamson and spent the morning planning and designing a new orthopaedic therapy space, which she really enjoyed, though it proved to be a challenge to fit all the requirements into the space available. She then headed to the kitchen to find out a little more about how patient meals are prepared, before meeting up with M and Matthew for their lunch. A big thank you has to be given at this point to Stephanie and the rest of the catering team who did a sterling job at providing safe meals for both children to enjoy. Both had been able to choose their menus before the day itself and the team had taken on board M’s request for either rice pudding or a rice krispy cake for pudding, which he was delighted to see.

After lunch, they both went to the Special Diets kitchen, where I’ve been told they met the 4 Simons who work there and M wondered if that was a prerequisite of working in the kitchens. I understand that the team was delighted to finally put a face to a name and actually meet a patient that they have had to cater for in the past. 15069048_10153959799661921_8246658330976253376_oThere was then enough time to head off to Coram Fields and chair a meeting about the new research centre being built and discuss the hoarding that will be used to surround the site. They even managed to find their way on to the building site, where M’s enthusiasm in particular has earned him the offer of a return visit to see the completed building in a couple of years’ time.

After our own day spent walking round London together, Mike and I met them back at the main reception where they were both clasping bits and pieces they had accumulated during their day in the job. It had been a fun day spent learning more about the hospital we have spent so much time in over the last few years and they thoroughly enjoyed every moment of their experience. We had a peaceful homeward journey after M’s gastro appointment, with M taking a nap as we headed out to Westfield for dinner and then both falling asleep as we travelled back home.

I can’t thank Steph, Matt and the rest of the Development and Property Services department enough for the time they took to spend with G and M and show them what goes into making a busy children’s hospital run. They both had an amazing day and are already talking about what department they might be able to take-over next year if they have the opportunity again.
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Eyes on Diabetes

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jdrf-t1dfootprint2016 has marked 2 significant milestones in my life, both of them linked by 1 common factor: Type 1 Diabetes. Back in February I celebrated my 39th birthday and my 30th diaversary, something I can never ignore as they fall on the same date, but this year has also marked 18 years of living with a complication of that disease, diabetic retinopathy. As a rebellious and angry teen, I never anticipated that the years of refusing to accept and manage the illness that set me apart from my peers would ultimately result in near complete loss of sight in my left eye. Of course I knew that the risks were there, but I didn’t fully understand that the problems could, and in my case would arise when I finally stepped up and took control once again, determined to make T1D only a bit player in the story of my life. I now have to live with a permanent reminder of just how damaging this illness can be.

For those who don’t know, diabetic retinopathy is caused when the fluctuations in blood glucose levels cause changes in the blood vessels in the retina. New blood vessels may grow on the retina to improve the blood supply there and in turn, these weaker vessels can swell and burst leading to a detached retina or, in some cases, complete loss of sight. If the symptoms of this complication are identified early enough, careful monitoring of the eye can help reduce the need for further treatment and the risks of the problem spreading further. stages-of-diabetic-retinopathyFor those with already well-developed retinopathy, laser eye treatment can be given to prevent those new vessels growing further and reduce the chance of new vessels growing too.

Regular diabetic eye screening should be done on an annual basis and can be carried out at your local optician as long as they have the facilities and expertise to do so.The screening tests are not invasive as they simply require photographs to be taken of the retina and a thorough examination of your eye. In my case, a regular eye examination at my opticians  picked up the signs of retinopathy in my left eye and I was immediately referred on to our local eye hospital for further assessment. What happened over the next few days is still shrouded in something of a blur as consultants were summoned, examinations carried out and advice sought from Diabetes UK as to what my next step should be. The laser treatment I needed to stop the progress of the rogue vessels was done and that really should be where my story ends with lessons learned and an altogether wiser individual moving forward into the exciting new challenges of career choices, married life and parenthood.

Unfortunately, I was not so lucky.

I had the misfortune of being treated by an over-zealous medic, who wanted to ensure that the retinopathy was stopped well and truly in its tracks and that no further intervention was required. Instead of treating the eye with the recommended number of burns, a huge amount more was administered leading to the partial detachment of my left retina and leaving me with less than 5% vision in my left eye. blurred-eyechartThe 18 years since that fateful day have been filled with twice yearly eye examinations at our local eye hospital, regular eye checks, cataract surgery, prism lenses to reduce double vision and the resulting headaches, and the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment. I am still able to drive, though my licence now has to be renewed every 3 years following a specific eye test to ensure that the loss of vision in my left eye won’t impact my ability to drive safely and I can still be independent in the things that I do. I have travelled, got married, had children and continue to build my career as an accountant and my eyesight hasn’t stopped me doing any of those things. My night vision is poor, my depth perception almost non-existent and my colour perception drives the rest of the family mad, but I am fortunate that I can still see.

I am one of the lucky ones in so many ways.

Back in 1991, the International Diabetes Federation (IDF) and World Health Organisation (WHO) created World Diabetes Day as a global opportunity to raise awareness of both types of Diabetes, the reality of living with this disease and the escalating health risks resulting from these conditions. That’s why I’m pleased that this year’s World Diabetes Day (#WDD2016), celebrated today on Sir Frederick Banting’s birthday, has taken “Eyes on Diabetes” as its theme, focusing on two key areas:

  • The importance of screening for early diagnosis of Type 2 diabetes; and
  • The treatment needed to reduce the risk of serious complications.

Statistics suggest that at least 25% of those diagnosed with both types of diabetes will suffer from diabetic retinopathy in their life, with some sources quoting figures as high as 90% of those who have been living with it for 20 years or more. These are statistics that can be reduced and I truly believe that education is key in making that difference. What I hadn’t understood was that a rapid improvement in blood glucose levels can lead to a worsening of retinopathy and my approach to improving my control should have been to do so gradually to ensure that my body had time to adapt. There are always lessons to be learned from the experiences of others and I just hope that my story can add to that education process.

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From all angles

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The last few months have been busy ones in all areas of our life, which I haven’t been shy in talking about, but the one aspect that I haven’t mentioned for quite some time is where we are health-wise with M’s EGID. You could view the reason for the radio silence as a good one – we haven’t really been making any significant progress and everyday continues to be a battle to see if we can reach and maintain some semblance of status quo for a decent length of time. I’ll be honest, since March things have been quite challenging as we have had little medical support and we have felt, at times, as if we’ve been cut loose and are paddling desperately to make some headway by ourselves. The reason for the missing input is that we are in the process of trying to build a shared care relationship between GOSH and our local hospital once again and at long last do appear to be making bmd6e7zcyaef7disome progress, albeit very slowly. We last saw M’s GOSH consultant in the middle of March, when it was somewhat reluctantly agreed by us that we would wait until November for his next GOSH appointment with the plan being that we would meet and then have an appointment with our local gastro team during the interim period.

It may well come as something of a surprise that we are even considering transferring some of M’s gastro care back to our local given the  numerous problems we’ve had in the past, but this time we were encouraged by the fact that his new gastro consultant is a registrar that we got to know whilst at GOSH and someone we trust implicitly when it comes to M and his health. Dr W, who has invited us and M to be on a first-name basis with him, was instrumental in getting M admitted 2 years ago when we made the decision to move to elemental feeding and so is someone who knows something of M’s background and understands where we, as his parents, stand when it comes to treating this disease. We are also keen to gain some local support for M because, when crisis hits, it is very difficult to get any immediate care from GOSH due to the distance we live from the hospital and the inability to just pop along there for them to review his current state of health. There is a standing agreement that we can phone and discuss him with any one of his consultant’s team, but sometimes that isn’t enough to resolve the issue as quickly as we all need. supportDr W had already agreed with GOSH that he was happy to meet with us and look at the potential possibility of taking over some of M’s care during last year’s disastrous admission and he understands that there is a trust issue between us and our local hospital that he and his team will need to work hard to re-establish – something that is so critical to M’s well-being.

With a little prodding, it didn’t take too long for Dr W to give me a call and then for an initial appointment to arrive on our doormat and Mike, M and I met with them in the middle of June. At this point, M’s broken leg had unleashed an unexpected level of havoc on his body and we were struggling to manage the ever-fluctuating bowel issues as well as his increasing reluctance to drink the E028 and huge disappointment that we couldn’t undertake any food trials whilst he was so unstable. The team was great, but it really was just a conversation about what we were looking for and what they felt they could do for us. A few interesting insights and suggestions about M’s diagnosis were thrown out, but there was no opportunity to ask questions about them and now, 3 months on, our reflections have left us wondering about what the next steps will be. What didn’t come as a surprise was the question mark over whether M is truly suffering from so many genuine food allergies or rather if there is an underlying problem with his gut and/or bowels which means that he is unable to tolerate so many foods at the moment. This has been a question that has been stumping his GOSH dietician too, who has freely admitted to finding M one of her most challenging patients ever and is hoping our local will provide a fresh pair of eyes when it comes to considering how best to treat him. Dr W also expressed a concern that 20150203_082342M would eventually stop drinking the E028 altogether and stressed that we need to find a viable alternative before we reach that point. This has proved to be remarkably insightful as it is now one of the biggest issues that we have had to contend with since that June appointment, with M struggling to drink even half of the required amount and with no new foods in his diet, there are growing concerns about both his weight and his nutritional intake.

Just before our Portuguese holiday, I contacted our GOSH dietician to discuss with her the lack of progress we’ve been making with M and asking for her input as to what we should do next. The email reply I had came as something of a concern as she explained she was under the impression that all care had been moved to our local hospital and she was surprised that I was looking to have a further conversation with her. I fired off a considered response, copying in both the GOSH and local consultants, advising that whilst we had met with the local gastro team in June, we had heard absolutely nothing since and really needed some medical advice once September started, although somewhat ironically we have had our next GOSH appointment booked – September 2017! Thankfully the strong relationship we have built up with this dietician since M first went to GOSH 5 years ago meant that S was happy to step in and gave me a call just a few days into September. She was as concerned as I was about the lack of medical care being given to M at the moment and during that lengthy phone conversation, worked with me to put a plan into place for food trials over the next 4-6 weeks. She also offered to chase both Dr W and our GOSH consultant to find out what was happening regarding the transfer of M’s care and try and speed up the process to ensure that M is seen before November if at all possible. I’m not quite sure what strings she pulled, but within a week of speaking to S, Mike received a phone-call from Dr W to tell him that a plan had been agreed between the two hospitals and an appointment would soon be forthcoming. Delighted to hear that a plan would soon be put in place, Mike asked whether we could be privy to the discussion they had had, so that we too were on board with whatever next steps they were expecting to make. Another lengthy conversation later and at long last, we finally had some idea of how M’s care will be handled until the end of the year at least.

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The most critical aspect of looking after M right now is that no-one really understands what is going on with his body, his bowels and gut in particular, and there doesn’t appear to be any logical explanation why we seem to be stuck at just 5 safe foods. Add to that the added complications of the massive downturn in his health that happened as a result of his broken leg and the resulting failure to find ourselves in as good a position as we were a year ago, the medics all agree that they are more than a little stumped. So, rather than rush into more tests or a radically changed approach to his treatment, our local gastro team have booked monthly appointments for the next 3 months, where they will be assessing and observing him without getting too involved in the medical decisions. Obviously any problems that we do encounter during that time will be addressed, they won’t leave M to suffer unnecessarily, but they are leaving us to work with GOSH in terms of his food challenges and medicine tweaks. They have also recognised the need for psychological support, not just for M, but for the whole family and are proposing that we start with weekly appointments, split into fortnightly appointments for M and the alternate weeks for Mike and me. We have long argued that the diagnosis of his EGID has a huge psychological and emotional impact on M and have frequently seen the outpouring of that in the home environment. The added stress of his SATs this year is already showing at both home and at school and so I am hopeful that with these regular sessions in place and the support of us and his teacher, we will ensure he makes his way through Year 6 relatively unscathed. With this kind of all-encompassing care in place and the availability of local support for any admissions or longer term treatment changes that might be needed, the strain on the family will hopefully be reduced a little too, although it will obviously never fully disappear. We don’t know what the future holds for M and that is the most daunting thing we have to face as a family. What is encouraging is that there is already an open dialogue between some of the many people involved in M’s day-to-day care and our hope is that can only prove to be the best thing for him.

Life’s never dull

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I had today’s blog post planned and then this happened:

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Cue: reams of paper towels to stem the bleeding; a frantic phone-call to get M safely to school with a friend; miles driven between home, GP surgery, local Minor Injuries Unit and local hospital; and bucket-loads of tears and the occasional hysterics as anaesthetic was injected to numb her finger.

Result: no stitches for the time being despite being told 3 were needed originally, a well steri-stripped middle finger, a buddy strap to keep it straight for a couple of days and a much-needed day off school for when emotions eventually catch up with her.

Life’s certainly never dull in our household!

Giraffe, food allergies & me

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This restaurant chain has long been a favourite of ours, even before the days of M’s extreme restrictions, and was one of the very first that we ventured back to once we had successfully got 3 foods back into his diet in 2015. We’ve visited their restaurants in various locations across the UK – London, Bristol, Milton Keynes – and have unfailingly had great service and understanding about the risks surrounding food allergies. So I was disappointed recently to see a Twitter conversation where fellow allergy-sufferers had not had such a good experience and indeed where one had suffered a severe anaphylactic reaction when her request for no soy beans in her food had been ignored. tweet

Naturally, me being me, I couldn’t help but wade in with my size 8s, not just because of our previous encounters, but because of our most recent and excellent experience at the Giraffe restaurant in the Brunswick Centre. I was so impressed with the impeccable diligence taken in regards to safeguarding my children during our meal that I have been singing their praises far and wide and felt it was about time that I did the same here as well.

img_11141G, M and I had headed there for an early supper following a busy day in London. G had been at her 2nd YPF meeting at GOSH for the day, whilst M and I had walked many thousands of steps exploring the activities and displays on show to mark the 350th anniversary of the Great Fire of London. Once our day was done, we had just enough time to sit down for our dinner before heading off to catch our train home and wandered to the Brunswick Centre because of its proximity to GOSH. The Brunswick Centre hosts a number of different restaurants, most of which we have tried at one time or another over the years, but Giraffe is the one that we most commonly head back to as both children enjoy the food and it is one of the few that prepares rice for M to accompany his meal.

downloadDecisions made about what they’d like to eat, our waitress came to the table to take our order and this was when their attention to details become really apparent. I started by telling her that both children had allergies and she immediately disappeared to grab their allergen listing to run through their menu choices with me. I mentioned that M’s allergies in particular were complex and unlikely to fit the detail given in their book, but she advised me that she had to go through it because she would be asked about it as soon as the order went to the kitchen and that her neck would be on the line if she hadn’t taken that first step of checking it all out. We started with discussing what would be safe for M to eat and she was immediately able to offer brown rice, a grilled chicken breast and cucumber slices, a meal that would more than meet his needs and then we moved on to G.

G had decided she really wanted steak and chips for dinner and whilst there was no problem with preparing a safe steak, the chips were more of a problem. Our cheerful waitress said it was possible that the chips couldn’t be cooked gluten-free as it was dependent on whether the oil in the fryer had been changed since their lunch-time service or not. She immediately headed off to the kitchen to check the situation with the chef and came back to apologise that unfortunately the chips would be cross-contaminated and so we needed to pick something else. G was insistent that she didn’t want rice and I was struggling to spot an alternative as the potato wedges are also cooked in the fryer and so wouldn’t be safe. 20150408_181702However, our waitress came to the rescue and suggested that G had the crushed potatoes as, whilst the menu stated they included dairy, she could request that they be prepared with just a little oil instead. Situation saved!

It didn’t take too long for our plates of food to arrive at the table and we were delighted with the meals that were served. Despite all the hassle with getting G’s meal ordered, the steak and crushed potatoes that arrived looked delicious and she devoured the lot in fairly short order. M munched his way through his dish too and the second chicken breast that we asked for half-way through was prepared and served before he had managed to clear his plate. I really was incredibly impressed with their approach to preparing, cooking and serving allergy-friendly food and how hard they worked to ensure that we all had a meal we could enjoy and remain safe eating. I don’t know if this system is in place across the Giraffe chain, or if it is carried out as thoroughly as it was at the Brunswick Centre, but I’m certain that this is a restaurant we would happily choose to eat at again.

Giving young people a voice

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ypfI mentioned a couple of months ago that G has been invited to become part of the GOSH Young People’s Forum, or YPF as it’s more readily known. When I wrote that post, she was just about to attend her first meeting and was excited to see what the YPF was all about. For those of you who perhaps can’t quite remember the finer details, it’s a group of approximately 40 young people aged between 11-25, who are all either current patients at GOSH, previous GOSH patients or siblings of patients. As well as being one of the youngest in the group, G is, I believe, unique in that she is the only member who is the sibling of an existing GOSH patient, which makes her comments valuable coming, as they do, from a completely different viewpoint.

The purpose of the YPF is to improve the services provided by GOSH to their young patients, whether inpatients or outpatients and focusing on the teenage patients in particular. It is very much a two-way process, with the hospital asking for input on important issues or developments that are happening on-site as well as the YPF members developing their own projects to improve the experiences of patients and their families. man-speaker-1Members get involved in all aspects of hospital life from inspections such as the PLACE assessment and providing valuable feedback on projects planned by hospital staff, to writing content for the TeenGOSH community webpages and helping design areas of the hospital such as the reception area, which was redeveloped in 2014. You can read more about what the YPF members have been up to through their blog here.

The Forum meets 6 times a year at the hospital and each meeting lasts for the full day, with lunch and snacks provided by the GOSH catering team. They have been brilliant at providing safe food for G, although there are still a few glitches to iron out such as making sure her lunch arrives at the same time as everyone else’s. The 2 meetings that G has attended so far have been extremely different, but overall her experience has been good and she’s keen to continue her involvement with the YPF for the time being. At her most recent meeting – the minutes of which you can find here – they really did cover a whole range of different aspects of hospital life. G has now become something of an expert on the subject of the recruitment process and was able to share what they had been told about the different areas that needed to be covered when GOSH is looking to recruit new members of staff. A professional photographer went along to take photos for the new publicity campaign to raise awareness of the YPF and its role within the hospital and G is looking forward to seeing which photos are chosen for the final published materials. They were also lucky enough to go on a couple of tours of some little known areas of GOSH, including the various sacred places that provide spiritual support for those families from a number of your-halloween-party-2014-in-paris-sizel-161421-649-420different religions and a sneak peek at the Morgan Stanley Garden that was displayed at the Royal Chelsea Flower Show earlier this year. The particular highlight for G was the discussions held around arrangements for the teenage attendees of this year’s Halloween and Christmas parties and she had great fun inventing gory names for the food on offer at Halloween.

Cheese and Onion Skin flakes anyone?

M’s happy ending

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M had been anxiously counting down, fretting that the day might never come, but finally it arrived with just over a week to go until the end of term and I had left him at school that morning absolutely buzzing with excitement about everything planned for the day. It had been marked as an important day ever since his last fracture clinic appointment 3 weeks before, which you may remember showed that the break was not mending as quickly as the orthopaedic consultants would have liked and left M sporting his rather snazzy sarmiento cast for a few more weeks. IMG_0506[1]During that unexpected extra time, M had really made the effort to use his leg even more and became scarily fast and adept at using his crutches in every situation. The last week saw even more development as he more or less abandoned his crutches at home and finally started putting his full weight on his left leg. All this to ensure that that cast would well and truly be removed that afternoon and be needed no more.

Our afternoon started with a DEXA scan at the rheumatology department of our local hospital to assess M’s bone density. The severity of both this break and his previous broken arm alongside the longer than anticipated recovery time had rung a few alarm bells for his gastro team and they wanted to check that his restricted diet and years of malabsorption issues hadn’t had a detrimental effect on his bones. Although the blood tests done during his December admission at GOSH had suggested his calcium levels were fine, this additional test would give us a clear picture of his bones and hopefully put our minds at rest. I had been warned that M would need to lie still for up to 45 minutes, something I doubted would be do-able without a lot of persuasion, by which, of course, I mean bribery, but he promised to try his hardest as he realised how important it was to get these results. Fortunately, the scan itself actually took less than 10 minutes to complete and whilst M did have to lie very still, he closed his eyes and tried to relax as the bed and scanner arm twisted and turned around him to take images from all the necessary angles.

DEXA scan over, we had just enough time to walk across to the outpatients department for his fracture clinic appointment. With our timing near on perfect, it was almost straight into the x-ray suite, where M chatted away with the radiographer as if he was an old friend and went through all the motions to get the perfect set of pictures of the fracture site. From there, it was straight into clinic and minutes later into the plaster room to have his sarmiento cast removed. Ear defenders were quickly put into place before the saw was started and M’s expressive face reflected his nerves and the mild discomfort as the plaster technician cut through the cast and the vibrations disturbed his sensitive leg. The front half was removed and trimmed as M wanted to bring it home as a memento of the last 6 weeks and I flat-out refused to bring home the back half, covered as it was with layers of dirt, sweat and oodles of dead skin.

IMG_0777[1]M and I sat waiting for the orthopaedic consultant to look at his x-rays before giving us his opinion, so I tentatively peeled back the tubigrip stocking that had been the only barrier between his leg and the plaster for the last 3 months. His left leg was a little skinnier than his right, though not as much as we had feared it might be, but was also incredibly hairy, something we hadn’t anticipated at all. A little research told us that when a cast is in place for an extended period, it causes constant irritation of the skin and so the hair grows to form a protective layer between the skin and the plaster cast. It was a completely unexpected insight into what M might look like when he eventually hits those dreaded teen years and puberty – and he really wasn’t impressed! In stark contrast to his skinny, white and very hairy leg, M’s foot was almost orange in colour and as scaly as his bearded dragon thanks to 13 weeks of no washing and hot weather. I snapped a quick photo to show it to M and the entire fracture clinic must have wondered what was going on as he and I dissolved into fits of giggles as we tried to decide the best way to remove layer after layer of the dead, scaly skin. For the first time ever, M couldn’t wait to get home and jump into the bath and he stayed in it for a long time that evening in an attempt to remove both dry skin and hair.

IMG_0783[1]We were sent home with a walking boot and crutches to help ease him back into the routine of walking and exercising without his leg in a cast and within 3 weeks both had been abandoned to one side. We’ve been back for our final fracture clinic, where M was discharged with a clean bill of health and permission from the consultant to participate in as many of the activities as he wants at next week’s activity camp. Unbelievably there is no physiotherapy available for M through the NHS, but we have an excellent private physio in a nearby town and M will have a couple of sessions there to get him well on the road to recovery. He is having to learn to pace himself, something my hyperactive 10 year-old is not very good at doing, but the aching leg that results from a couple of hours running around our garden with G is a harsh reminder that his leg won’t just bounce back to where it was at the start of the year. It will take a few months to recover the strength, muscle tone and mobility that M is used to, but some hard work and focus will get him there in the end.

Most importantly, M got the happy ending he’d been hoping for since that miserable day in April. He was able to spend his last week of Year 5 back in school without crutches and even had some time back outside in the playground with his peers. And nothing will beat the absolute joy I felt as I watched him disappear from the classroom surrounded by his supportive friends on the last day of term.

All the Fun of the Fair

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There’s no doubt that the weeks since April have dragged past at snail’s pace for a certain young man and his broken leg. 10 weeks into having that leg encased in plaster, and all of M’s hopes were pinned on the sarmiento cast finally being removed and allowing what must now be a skinny, white limb see some summer sun and fresh air. Unfortunately, the last fracture clinic appointment did not go according to M’s plan and the x-rays showed that the bone regrowth had slowed down and was not at the level the orthopaedic consultants were expecting it to be after over 2 months in a cast. The news that he has to survive another 3 weeks of limited mobility was not well-received and, having seen him stoically accept the verdict before crumbling once we left the unit, it was a massively disappointed and heartbroken little boy Mike and I had to take back home. The next 30 hours or so saw him at a lower point than we’ve experienced for a long time and it was only thanks to his sense of commitment and phenomenal strength to keep fighting the fight that we managed to convince him to go to his school’s summer music concert that evening, where he disguised his emotions well and took part on his cello and in the choir with reasonable gusto.

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What we needed was something to cheer him up and fortunately that something was already pencilled in on our calendar for that very weekend. It might not have looked too promising during Stagecoach on the Friday night as M broke down in tears about not being able to dance with everyone else, but thanks to much encouragement and enthusiasm from his big sister as well as a determined spirit that won’t be kept down, by early Saturday morning, things were looking a lot brighter and it looked like we had weathered yet another health storm.

The reason? The song and dance routine that their Stagecoach school were going to be performing as part of our local carnival’s parade and a huge serving of 70s disco to boot. We had always planned for M to be part of the parade in his wheelchair, knowing that the mile and a half long route would be too much for a newly healed leg.

IMG_0502[1]The preceding weeks had been busy with costume preparations and plans to pimp his wheelchair for the event and his decision to ask for a 70s themed cast at the previous fracture clinic meant that we were all set for the parade. Mike and I had also been roped in to help out for the day and I had even managed a few tweaks to our own clothes to make sure we were part of the 70s disco theme. All of the children were fantastic as they sang and danced their way towards the town’s football club and entertained the crowds, who joined in with the familiar moves of “Night Fever” and “Tragedy”. I was particularly proud of G, whose hard work and dedication to her dance saw her selected to be one of the 2 dance captains and she led the group with a flair and sense of fun that I rarely see from her when she’s performing. She really stepped up to the mark and the smile on her face showed just how much she enjoyed it.

And M enjoyed himself too, despite his insistence he wouldn’t. He and I showed off our moves as we grooved our way down the High Street and he waved right and left as friends called out and cheered our group as we went past. Of course the disappointment of not being able to participate as fully as he would have liked was still there, but he was caught up in the excitement of the day and really did enjoy all the fun of the fair!

 

Any plans for the weekend?

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We’ve got a weekend in London ahead of us and, being our usual optimistic selves, have planned a whole host of activities to keep us busy at every interval. Thanks to remarkable coincidence, we are able to combine 2 opportunities that have come our way and I’m hoping that Sunday evening will see us back home, exhausted, but also exhilarated by our experiences.

Allergy_Olympia_Logo_2Last year we decided somewhat reluctantly not to make our annual pilgrimage to the Allergy & Free From Show in London as M was in the midst of being tube-fed and had, at that point, only 4 safe foods in hand. Whilst I would have loved the opportunity to explore the offerings we’ve found at these shows in the past, I knew in my heart of hearts that it was more than M would be able to cope with and I wasn’t prepared to put him into what was bound to be an emotion-filled, stressful situation. G and I did toy with the idea of going without the boys, but other events came along and we enjoyed a weekend at home instead. To my surprise, M was incredibly disappointed not to go and was insistent that when this year’s show rolled around, he wanted to attend and was as keen as we have been before. At the start of this year, Mike and I discussed whether we really would go, talked it over at length with M and finally took the plunge and got our tickets for this Saturday. Over this past week or so, M and I have been looking at the businesses that will have stalls in Olympia when the show opens on Friday and he’s already made a note of a few he wants to visit. As I have become more active in the allergy community over the last 12 months or so, especially through friendships built at the FreeFrom Food Awards in February, we are all looking forward to meeting up with some familiar faces during our visit. This show is an amazing event and one that I would highly recommend to anyone living with allergies, or indeed following a vegan lifestyle. You can still get tickets to attend by clicking on this link and the show will be there until Sunday.

GOSH-logoSunday brings a different opportunity and an exciting one for G. When M and I took part in this year’s PLACE assessment at GOSH, I met and got chatting to Fiona Jones, the Children and Young people’s Participation officer at the hospital. One of her roles is to promote the GOSH YPF, or Young People’s Forum, something I had never heard about before, but was interested and keen to find out more. The YPF is for patients, ex-patients or siblings of patients at GOSH who are aged between 11-25 years old and who are interested in expressing their opinions about how GOSH can best support its teenage patients as well as being involved in projects that will help make the hospital experience a positive one for patients and their families. Unfortunately, M is too young to become a YPF member just yet, but Fiona asked if I thought G would like to become involved and I promised to ask her as soon as I could. To my delight, G was excited to be asked to join the GOSH YPF and is looking forward to attending her very first meeting on Sunday. focus-groupBoth children have already been lending a hand by trialling and reviewing an on-line project called Digital Badges, something they have really enjoyed trying out over the last 2 months or so, especially giving their feedback on how this project worked. G will spend her day with this group on Sunday at GOSH, whilst Mike, M and I explore the nearby British Museum and their Sutton Hoo exhibit and I can’t wait to hear all about it during our return journey.