Tag Archives: nurses

Beating the Blues

Today is Blue Monday, the day predicted to be the gloomiest day of the year due to bad weather, the stark reality of our Christmas over-indulgence now affecting our dwindling bank accounts, the post-Christmas buzz that has completely disappeared from the horizon and our well-meant resolutions that are proving far harder to keep than we ever imagined. There are some New Year resolutions that you know will be difficult to keep beyond the first few days – abstinence springs instantly to mind – and then there are those that will never, could never be a challenge, but rather are an absolute pleasure to complete. Last year gave our family 2 amazing opportunities, experiences that were so life-changing, so extraordinary for both children and so liberating for us all that I knew that one resolution that I would not fail to meet was to write a post to not only recapture what are amongst my most favourite memories of 2016, but to also encourage others to get involved with what is a truly inspirational organisation.

9a78a65173e2885ea3a8c8b9d3ccd1acThanks to the amazing charity, Over The Wall, last year both G and M were able to escape from the reality that is their life at home coping with chronic illness and find a world where nothing could hold them back or stop them from achieving what might have previously seemed to have been impossible. G discovered a group of friends who could understand completely what life can be like when you have a sibling with serious health issues, but who got to know the unique, kind-hearted, gentle-spirited and passionate girl she can be in her own right and not simply as “M’s big sister“. Her confidence grew as she responded to the love, focus and encouragement that was given to her throughout her week away and she found a new and irreplaceable identity as a valuable member of last year’s Purple Girls at the South Siblings camp. Likewise, just a few months later, M was able to experience, for the first time ever, a week away from family, where he got to be as carefree a child as his school-mates are and could try out a whole host of new activities, confident and safe in the knowledge that his medical needs were being well-managed by the volunteer team surrounding him and he just needed to concentrate on having fun. Their time away from home taught them both that there is more to them than EGID and food allergies: Over The Wall truly gave my children wings to help them soar.

So, why write once again about the extraordinary adventure that is Over The Wall? Well, with a New Year comes new opportunities and you don’t have to have a child living with a chronic illness to be able to become involved with this organisation:

  • Application forms are currently open for places on the 2017 camps and be it the Siblings, Health Challenges or Family camp that meets your needs, now is the time to register your interest and find out if you can secure a place. Both children are glad to know that their forms have been completed and sent off, and it’s just a case of waiting to see if they’re back to the camp bubble this year
  • These camps depend heavily on the huge amount of time given to them by their team of dedicated volunteers. If you’re interested in volunteering your time and helping make a difference to young people impacted by health problems, volunteer applications are also now open. The medical team who willingly give their time are unquestionably invaluable, but whatever your skills, know that your presence will undoubtedly make a difference to the children that are there
  • OTW offer these camps free to those families who attend and to be able to keep doing what they do and successfully reach out to even more young people, they need your help in raising funds. As a family we decided to focus our fundraising efforts last year on OTW and will continue to do so for 2017. Thank you so much if you helped us make a difference in 2016. Cake sales, sky-diving, shaving your head or running a marathon – whatever your interest, please consider supporting this charity by raising sponsorship or making a donation

And just in case you needed a reason to support and spread the news about Over The Wall, here’s a few photos that capture the magic that transformed the lives of G and M in unimaginable ways in 2016.

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Why we should value our NHS

nhs-logoIf you live in the UK, you can’t help but be aware of the current problems faced by the NHS. The continuing debate over contracts for junior doctors has led to 4 strikes in the last 4 months, though the discussion has been raging for much longer, and there are more strikes on the cards if the issues can’t be resolved. Theses issues have been well-documented in the national press and I’ve no doubt that those of us who depend on a very regular basis on the healthcare provided by the NHS have our own opinions about these strikes, especially if we know, or indeed are, one of the 25,000 cancelled operations that have resulted from their action. Whatever your thoughts about these strikes – and believe me when I say that I’ve heard a huge cross-section of opinions from friends and acquaintances – it is impossible to ignore the underlying truth that the NHS is struggling and its future doesn’t necessarily look all that rosy.

Over the last 5 years, our experiences of the NHS have ranged from the outstandingly good to the outrageously awful. We continue to have a very reluctant relationship with our local hospital, who has unquestionably failed M at almost every step of the way and it is only our belief that local support and care is tantamount to his continued health and well-being as well as our peace of mind that has kept us in the battle for a shared care relationship between our local and GOSH. Likewise, whilst we are extremely grateful to M’s GOSH consultant and dietician, who not only gave us that elusive diagnosis 3 years ago, but who continue to advise, support and care for him with the honesty that we requested, the disastrous outcomes of our last admission have tested that “doctor – patient’s parent” relationship to its limits. We have accepted that they don’t have all the answers, nor access to that much longed-for magic wand, but we will keep going back because we have absolute confidence that M’s medical team, at least, will carry on striving to do their best for our medically complex challenge of a child.

Yet, despite all the lows, the high points mean that I can see there is something truly wonderful to be valued about our NHS. I see it in the regular phone-conversations that happen between M’s dietician and me, so that she can keep an eye on what’s going on from a food point of view and monitor how well he’s managing with drinking his E028 now that the NG-tube is gone. I see it when she takes her concerns to M’s consultant and talks them through and agrees a way forward, so that we don’t have to wait months for our next trek to London for an appointment before we act on the problems we’re experiencing now. I saw it in the care given to both M and me during his admission, when the nurses made sure that his best interests were met as far as possible and offered cups of tea when they were otherwise powerless to help. value-620-320I saw it in the frankness awarded to Mike and I during the December debacle, when we asked for an honest opinion about his future health and what we could expect; and it was given.

And I see it at the local level that for most of us is our main contact with the NHS. Not the senior consultants, junior doctors and hospital staff dealing with the chronically ill, but through the GPs surgeries and the doctors, nurses and other staff that work there. I know that we are incredibly lucky with the local medical centre that’s found in our small village and for as long as we have been a part of it, they have gone above and beyond so many times to make things easier and get answers and help whenever we’ve needed it. Recently, I hit an unexpected stumbling block in ordering the E028 formula needed to keep M going, one that had been caused by a lack of communication between the feeding team at our local hospital and just about everyone else. A feeding team nurse had contacted GOSH to confirm whether M still needed regular tube changes and, on being told that he no longer had his tube, she cancelled the monthly orders with the feeding company. Nothing wrong there you may think and I’d agree, except she didn’t advise us that she’d cancelled it, nor did she tell our GP that it was now their responsibility to sort out his monthly prescriptions.

may-arrows-on-a-wooden-post-and-a-white-sign-for-writing-a-message-D6WY0KThanks to past experience and my somewhat controlling approach to always having a supply of E028 in the house, I started chasing about when we could expect our next delivery whilst there was still a good amount of stock in my dining room and spent the next 40 minutes being pushed from pillar to post as I tried to track down who I needed to speak to and unpick exactly what had happened. When I finally established what I had to do, it was my wonderful GP’s surgery that I turned to and their fantastically competent staff. With the help of 1 receptionist, 1 member of office staff and the invaluable pharmacist, we eventually got M’s prescription sorted and marked as an ongoing monthly medication. They phoned, researched, ploughed through reams of medical notes and faxed until it was all sorted – and all with the attitude that they wanted to help, were willing to help and were happy to help, and a ready smile that reassured me I wasn’t being too much of a problem in their already busy day.

That is caring for the patient at its absolute best and that’s why we should value our NHS; for all those staff who get little thanks but make a big difference – or certainly did for this harassed Mum!

Early arrivals

efcniToday, November 17th, is World Prematurity Day. A day that acknowledges the early arrival of 15 million babies across the world every year, a statistic that increases annually. Pre-term births are defined as “babies born alive before 37 weeks of pregnancy are completed”, but…

What do you think of when you think of a premature baby?

You might recall images of micro-preemies, those babies born so early and so small that they can be cradled in the palm of their parents’ hands. You might think of babies covered with tubes and wires, enclosed in incubators or even tucked into supermarket sandwich bags to help keep them warm enough to survive. You might know of the risks associated with an early arrival and how hard the doctors, nurses and parents fight, with every inch of their being, to get those babies through another day and another long night. You may even have survived the weeks of hoping to get “just one more” week through your pregnancy, knowing that every single hour counts.

The thing is that preemie babies come in all shapes and sizes; the reasons for their early arrival are many and varied; and every family has a similar, but also hugely different story to tell. Each parent and child has their own individual challenges to face and yet premature birth is a common bond that links them all. Let me introduce you to 3 special preemies, each with a unique set of circumstances and a shared experience marking their arrival  :

20131118_191134Of course, you’ve already met the first one: G just crept into the premature category, arriving at 36+6 nearly 12 years ago and weighing an extremely respectable 8lbs. Her delivery was the result of fears about my T1D and the signs that my placenta was beginning to fail, so the doctors made the decision to deliver her to ensure she had the best start in life. Even though she had an initial problem with plummeting blood sugars, G’s stay in SCBU (Special Care Baby Unit) was short at just 3 days and thanks to the wonderfully supportive nurses on the High Dependency ward who looked after us both, Mike, G and I were able to come home a week after she was born and spent our first family Christmas together at home.

M was even more impatient to arrive than his big sister, although his birth weight of 5lbs 12.5oz at 33+1 gestation was equally impressive. M spent his first few days on NICU (Neonatal Intensive Care Unit), although there were times we felt something of a fraud, especially compared to the tiny 26-weeker 2 cribs along, who had been born at exactly 5lbs less than him. We had been warned from the moment I was first admitted at 26 weeks pregnant that once he arrived, M would almost inevitably need to stay in hospital until he reached his due date. It is of great credit to the dedicated doctors and nurses who looked after him that we were, in fact, able to bring him home after just 3.5 weeks and in perfect time for Mothers’ Day.

10329684_10152507367497848_7913075952615166607_oAnd this tiny, but beautiful fighter is B, the second son of our close friends and M’s godparents, L and C. Due to fetal distress resulting from pre-eclampsia, B was born at 27+2, weighing just 1lb 9oz and has had a very different battle so far than either G or M. He had suspected NEC (Necrotising Enterocolitis) in hospital and for a week things were very touch and go. Despite this rocky beginning, B is an incredible battler and even though he came home on oxygen after a long 98 days in hospital, 5 weeks later he had been successfully weaned off that too. 18 months on, he is a happy, loving little boy, who may be on the small side for his age, but is otherwise doing well and I know that his parents, just like us, will be forever grateful to those medics who have helped B fight and win.

image_for_happy_world_prematurity_day_5715493946These 3 precious bundles may not have had the easiest start in their lives, but we are lucky that they have each survived and become an irreplaceable part of our families. With a national health service that is in crisis, the neonatal units where G, M and B and thousands like them are cared for on a daily basis are seriously overstretched and understaffed. These children need an incredible level of specialist care to help them make it through those critical first few days and weeks of life and the doctors and nurses who give it are simply amazing as they offer not just medical care to the babies, but emotional support to the whole family. That is a gift that cannot be easily replaced and we know that we were extremely fortunate to be able to receive it.

Our thanks go to…

The week is winding down and I am definitely looking forward to the start of half-term and the chance to have a sleep-in over the weekend.  One’s thing for certain, being active in raising awareness whilst eating a restricted diet really takes it out of you!thank-you-languages

With T for Thanks being our topic for today, what else could I do, but issue a few heart-felt thank-yous to those who’ve made a difference to us in the 12 months since the last NEAW. It’s tricky to know where to start, but, in no particular order, I’d like to thank:

Our families – well it was a given really, wasn’t it?  But whichever side of the ocean they may live, our families have been there in whatever way they can 澳大利亚孩子-1202242and supported us in the tricky decision to move M to a NG-tube and the elemental diet.   We don’t know exactly what the next 12 months hold in store for us, but we can be certain that our families will be there every step of the way.

Our friends – another obvious lot, but again we couldn’t have survived the past year without them all.  Their help has been invaluable: from text messages to lengthy phone conversations; early morning G-sitting to late night conversations with a cup of tea; and much-needed hugs to unexpected hospital mail, every single gesture has meant more than they can ever imagine and helped keep us strong.

GOSH – our consultant, her great gastro team and, in particular, the fantastic nurses who work with such dedication on Rainforest ward. Their care for M back in December was just amazing and without them looking after us both and giving wise words and training, we’d have struggled even more with the reality of the NG-tube and the feeding pump.  We also owe massive thanks to M’s fabulous dietitian, Colorful solidarity design treewho is always at the end of the phone or the email and has given me lots of helpful recommendations as well as reassuring me that I’m doing things right when it comes to the whole food re-introduction thing.

M’s School – I am very aware of just how lucky we have been with the staff at M and G’s school. They have been so understanding of how life was changing for both children during this school year and have made every effort to look after them and help them feel happy and safe when at school.  5 of the teaching staff bravely took on the role to learn how to manage his feeding pump, which meant that I could return to my job, confident that they were competent in what they needed to do.  This week they were also quick to agree to M’s request to share his presentation to the rest of the school and every teacher made time to make sure their class could see it and ask any questions they had.  This school has done a wonderful job of nurturing both my children and I will be sad when G moves on to “big school” in September.

G – the best big sister that M could ever have had.  She’s loved her little brother through some of his darkest moods and, even if there’s a bit too much squabbling at times for my liking, she’s managed to continue to work on building a strong relationship with him that I hope will only get stronger in time.  She’s survived the challenge of SATs, maybe not without the odd tantrum along the way, and continues to strive to do her best at school and at home.  P1000121And my heart nearly burst with pride the other week when she announced at Stagecoach that M is her hero, because of how bravely he lives and copes with EGID.

Mike – I couldn’t finish without recognising the person who stands alongside me on this, the most challenging of journeys we’ve been on together, and is my strength when I’m feeling weak.  We’ve reached a harmony that enables us to take turns in being the strong one during appointments and I can’t think of anyone I’d rather be facing these decisions with.  He also understands my need to have some time to escape from the day-to-day grind of EGID and puts up with me disappearing off twice a week to choir rehearsals.

And thanks to all of you, who’ve kept reading my blog, put up with somemany…repeated requests on my part and have done an amazing job at sharing my posts on.  Your silent show of support is what helps keep me going, even when times are tough.