Category Archives: Special Needs Parenting

A pain scale for every season

My last blog post about M’s interpretation of his pain and how important it is for his medical team to understand him sparked a series of interesting conversations both on-line and in real life about just how effective pain scales can be for those who suffer from chronic pain. So many shared their own experiences of how their children express their pain and adapt to a new “normal” based on what their average day looks like and the symptoms they assume to be something that everyone has because they’ve never learned any different. What was most fascinating was the array of ideas and examples of the different pain charts out there that were sent to me and I thought I’d share some of them with you:

G’s godmother shared this pain scale image with me and I love the wording that is attached to it as it sums up to a tee how M has described his levels of pain over the years. From the magical unicorn of no pain at all which happens occasionally, to the breaking point of inconsolable sobbing and unbearable pain that little can ease, I’ve seen M pass through every stage of this chart on all too regular a basis. I doubt the colours, images or facial expressions would appeal overly to him, but it helps to clearly explain how he copes to those who need to know.

A fellow FABED Mum sent me this one saying, “It’s the only one that’s ever worked – I think it’s because apart from the last face, they aren’t very emotional, so she is prepared to admit to them. There is a Lego one, but the emotions depicted on the faces is *extreme* – I think it’s more for a paediatric A&E type thing. So a kid with a normal pain/health experience would probably find it helpful, but the level of distress the pain correlates to isn’t much help for someone who has made this into their normal…I do think these pictorial pain scales are good – pointing is so much easier than talking, to start the process. R finds the words ‘annoying/uncomfortable/miserable/horrible’ very helpful and she even sometimes uses them without prompting.” The recent release of the latest “Peanuts” film will no doubt lend added appeal to this Charlie Brown themed scale.

This third one I discovered through Twitter and was posted up by @2tubies, whose 6-year old son helped make his own pain chart for the school environment with the help of the school SENCo and his Mum. They used Lego figurines to depict how he might be feeling and offered some easy solutions for his symptoms. This solution-based approach is one that I find works well with M and have started using it more and more over the years. I rarely give M the option of staying home from school when he’s feeling unwell, but will instead list out those solutions I think might ease not only his pain, but also the whirlwind of emotions that is so frequently tied into what he’s feeling on a physical level. Whilst he was still being tube-fed, I would always start with the offer to slow down or even stop his pump for a limited amount of time and then followed that up with pain relief or a hot water bottle. My final question has always been what M thinks will help him the most and given he has a clear idea of what I’m suggesting, then we have always been able to find a solution that works for us both. Whilst giving these choices verbally works well at home, I imagine that presenting them in a pictorial fashion would make great sense in the school setting.

Of course, the ideas behind these pain scales can easily be extended to cover other physical and emotional needs that our children may have when outside of the home. When G was younger and dealing with her own health challenges, one of her fantastic teachers introduced the concept of a “magic marble”. We had discussed the use of a password, a word that was random enough to not be misinterpreted as a genuine contribution to a conversation and which would indicate that G needed help, but she was at an age when she was reluctant to vocalise her needs and the use of “rhinoceros” actually stuck out like a sore thumb most of the time. Instead, G kept her marble somewhere safe and easily accessible at all times, be that her pocket, bag, drawer or table, and just needed to give it to her teacher or place it on the teacher’s desk to indicate she needed some support. No other child was aware of the significance behind this marble and consequently didn’t bat an eyelid if they spotted her handing it over, assuming that she’d probably just picked it up and was handing it in. It was an easy way for G to communicate her needs about a sensitive subject and gave her a sense of ownership over a situation that was otherwise lacking her control.

At G’s secondary school, they have included traffic light coloured pages in the back of the pupils’ planners and the children are encouraged to use them by putting the relevant colour facing up on the desk if they need some help during a lesson, but are too worried or nervous to ask. For some children, a “traffic lights” approach using counters or cards can also be effectively used to indicate how they are feeling in any given situation, where red can indicate their sense of losing control or not coping with the environment surrounding them. The opportunity to be tactile with the counters may also help children with sensory issues order their thoughts and be more able to express them when asked. Even if the child is not able to share what’s troubling them, a clear plan of how the teacher or adult in charge should respond to each colour will change that child’s perceptions and experiences away from home. Similarly, M’s school uses a “Fist to 5” approach to their work, where fist indicates a lack of understanding and the need for some help, and 5 means they are confident and happy to carry on on their own.

Whatever the system used, these scales encourage a child to communicate with the outside world about how they are feeling and coping, even when they don’t have the words to express it.

What’s in a word

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

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

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

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

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

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

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

Reflections of an admission

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“I think we can all agree that this admission has been a complete disaster”

Mike and I could have been forgiven for expecting to see Craig Revel Horwood in the room, but in fact those were the opening words of M’s consultant at our meeting on day 13 of his admission. A meeting attended by on-call gastro consultants, ward registrars, dietician, nurses and the gastro psychologist and where not one of them disagreed. When those are the words you hear uttered by one of the senior gastro consultants at Great Ormond Street Hospital, you know that things have gone really badly wrong. To say that Mike and I were surprised to hear them offered as the opening gambit is an understatement: we had gone into this meeting prepared for battle, expecting to have to defend our opinion that M’s current deterioration was due to the food challenges, that same discussion I’d been having for the previous 10 days with that same multitude of medics, and without warning they appeared to have come round to our way of thinking.

Since M’s discharge, lots of people have asked about the admission and what happened whilst we were in London. The plan for the original 2-week admission was to trial 4 foods whilst we were there – potato and egg, which we hadn’t done at home – and banana and salmon, which we had, but he had failed previously. The original expectations as discussed and agreed with both his consultant and dietician were that he’d start to show a reaction within 48 hours of starting each food and so the admission was to look like this: 3 days observation to understand his “normal”, 8 days of food challenges – a new food every 2 days whilst continuing with the previous ones – and then 3 days to assess before sending him home. This approach of challenging with 4 foods in 10 days was ambitious to say the least and left no wriggle room for recovery if he failed at any point. Given we are used to spending at least 5 days slowly introducing a new food to M and then expect to take a week, if not longer, to get back to normal, it quickly becomes evident why things didn’t go according to plan.

3 days observation – these happened, but they hadn’t allowed for just how upset M would be by the short-notice of his admission. As I had packed our case having picked him up from school, I could hear him sobbing in the other room and discovered him lying on G’s bed, wrapped in her arms as he cried about missing her birthday and being away from home in the lead up to Christmas. This traumatised him so much that, as for so many people even without gastro issues, his tummy/bowels/digestion were upset and didn’t behave as the “normal” we’d got used to over the last 12 months. This was to later prove a problem as the ward doctors insisted he was constipated on admission and struggled to accept that these new foods were in fact the issue.

8 days of food challenges – we started with potato at a speed and quantity that I just couldn’t comprehend. There was no go-slow and gently increasing his intake here, instead he was allowed to eat “as much as he wants” and after 2 years without potato, believe me he went at it with gusto, even eating 6 roast potatoes at one sitting. Within the first 24 hours he started to show reactions to the potato – severe reflux, tummy aches, a constant need to wee and he started to soil again, something he really struggled with on an emotional level. The ward doctors refused to believe he could be reacting so quickly and their repeated mantra to me soon became “it’ll take 4-6 weeks for him to show a reaction” and “he just needs to push through this“. As each food was introduced, things got worse and worse as he was now completely incontinent, a position we hadn’t found ourselves in for a year. All the signs of his bowel starting to shut down were there as he was weeing for Britain, his appetite was dropping off and his energy levels started to wane and I kept saying that these indicated he was failing the foods, only to be told that it wasn’t possible. They were palpating his tummy twice a day and insistent it felt fine and every conversation ended with “it’ll take 4-6 weeks..yada yada yada…” – by now you get the picture! By day 8, they finally agreed to x-ray and, lo and behold, he was chronically impacted. This x-ray was apparently one of the clearest they’ve ever seen showing it – solid black throughout his colon due to the blockage.

Then came the heated discussions about why this had happened. They were insistent that he must have come into hospital constipated, though how a child who goes every day can be constipated they’ve still to satisfactorily explain to me, and I was equally insistent that he wasn’t. We ended up agreeing to disagree as neither of us could prove it either way, though it has now been noted that should M be admitted again, they will x-ray at the start of the process to make sure we all know the state of his bowel.

3 days assess/discharge – became 6 days of powerful bowel prep continuously via M’s NG-tube plus additional senna for the last 3 of those as things simply weren’t shifting as hoped. I have honestly never seen him so ill as he was by the end of that week – bent double from the cramps, crying, refusing to move from bed or engage with anyone, lethargic and rating his pain at an 11 or 12. Throughout this time he was expected to continue all 4 foods, just in case his obvious bowel reactions were actually nothing to do with the challenges and they had introduced a daily dose of senna to keep things moving, something we hadn’t needed at all during the 12-months being tube-fed.

We finally came home after a further 5 days of “recovery” time in hospital and decided to stop banana and salmon straight away as well as the daily laxative. Things slowly started to improve and we made the decision to allow him to have egg and potato in small amounts for a few more days over Christmas. However, since the 27th we’ve stopped those too and gone back to just his 5 safe foods – and he has recovered amazingly. No tummy aches or pains, as much energy as we’re used to, back to regularly using the toilet with no issues and much, much happier in himself. The medics would no doubt argue that it’s difficult to pinpoint when things started going wrong, but to me it seems obvious: the introduction of these 4 foods is undoubtedly the root cause of his bowel problems in GOSH.

That’s the truth behind our December admission and yet to many I’ve no doubt it will seem that it all went incredibly well. You see, the one thing that was achieved during our stay was that M’s NG-tube was removed and my little superstar has proved us all wrong by accepting the challenge of drinking his feed head-on and is drinking a much-reduced volume on a daily basis. M’s consultant was very determined to get the NG-tube out and at times it felt to us that it was her sole focus for the duration of the admission, which was difficult to cope with when we were needing and hoping for so much more. Achieving that has been amazing, but he hasn’t suddenly started eating a “normal” diet, in fact he’s exactly where he was before we went in, and the need for the elemental feed (E028) is still very much there. The flip-side of losing the tube is that M’s EGID, multiple food allergies and limited diet whilst not diminishing in any respect, have once again become hidden, a set of invisible illnesses, and we have all had to adapt our expectations by keeping that knowledge firmly in the front of our minds. That single small step forward simply does not cancel out the many massive steps backwards that happened whilst we were in hospital and doesn’t acknowledge the harsh reality that very little else in his life has actually changed.

There are no strangers…

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“There are no strangers, only friends you haven’t yet met”

W.B.Yeats

Like most people, I have collected a variety of friends over the last 30+ years, picking them up as I’ve ventured down the various paths my life has taken me. Those friends I’m still in touch with these days span the years: from those I met in the playground and classroom during my first decade to those I survived my angst-ridden teen years with; from the few that are still hanging around following university and my accountancy training to finally that group of “Mummy” friends made since we first found out we were expecting G. In the last 5 years, my friendship group has grown massively as I’ve added to the mix those who are travelling alongside us in our current journey; the fellow EGID Mums and GOSH parents we’ve been privileged to get to know in some of the most challenging of times. These are individuals who really understand the daily struggles and ongoing battles that we survive and are always there to lend a shoulder to cry on or offer words of encouragement or advice when no-one else can. What makes these friends so special is that, in many cases, I’ve never actually met them face-to-face, thanks to the rise of the internet and social media, and yet they are unquestionably available whenever they are most needed.

During M’s recent GOSH admission, we received some amazing demonstrations of support and love from my friends, more than I could ever have expected, and which ensured I never felt on my own. Almost every day I received a message via text or e-mail or FB asking how things were going, sharing news from home and sending love, thoughts and prayers to both M and me. Sometimes those messages would become a conversation and sometimes they simply stood on their own as a reminder that other people were thinking of us. Cards and presents were sent to cheer us both and M’s class wrote their own messages to him, keeping him in touch with all that was happening in school.

We were lucky to receive visits from a couple of good friends: one who we met through FABED and the other from a Mum I met on Rainforest ward during our 2014 stay. These visits really brightened up the long days in hospital and I hope our visitors understand just how much their time meant to us both. Much to M’s disappointment, a couple of other planned visits didn’t happen due to our inability to leave the ward due to Klean-prep, last-minute appointment cancellations and at least one epic failure by me and the other Mum to successfully liaise where we were and when; but most importantly, the thought was there. We also got to meet 2 of those “virtual” friends from on-line support groups, who during the length of our admission were also admitted to GOSH. The ability to finally put faces to names, with a reasonably comprehensive background knowledge already in place and be able to spend time chatting, laughing, drinking tea and commiserating was priceless.

One of my highlights was the opportunity to reconnect with an old FABED friend and fellow blogger, Annie, one afternoon. Her son, R, had been at GOSH for tests that week, but had been staying at the patient hotel with his Dad. On this afternoon, they had been sent up to Rainforest ward for a final meeting before going back home and were given the bed across from M. Whilst Annie, her husband and I chatted away, catching up on news from the last 9 months, M and R renewed a previously fleeting friendship and spent time talking, constructing vehicles, discussing bearded dragons, watching TV and generally just spent time chilling out together.

The most truly astounding show of support came from another Mum that I’ve never met in real life and definitely wouldn’t know if I bumped into her on the street. She is based in London and has a friend who works as one of the visiting art teachers at the GOSH hospital school. Upon hearing that M was confined to the hospital buildings and that I had little time to get out and enjoy much more than quick foods for my meals, she thoughtfully prepared some home-cooked meals that she tailored for my dietary preferences, packaged securely for storage in the ward kitchen and sent in with her friend. These meals could be easily heated in the microwave and were a real treat after days of utterly uninspiring sandwiches and ready meals. As well as this bag of goodies for me including some much appreciated fresh fruit and biscuits, she also tucked in board games and some hand-made get well cards for M.

And it wasn’t just the support in hospital that made the difference: there were people keeping the home fires burning on my behalf too. Both schools kept in touch, asking for updates, talking to G to find out how she was coping with it all and keeping me informed of arrangements for the end of that term and the start of the next. Their Stagecoach principal e-mailed through a suggested directing project linked to the new term’s theme, which would provide some much-needed distraction whilst he was confined to his bed and sent text messages to ask how things were progressing, when we were coming home and wishing us a peaceful Christmas. Finally, thanks to the Mum of G’s best friend, N, Mike could keep those work commitments that he simply couldn’t rearrange as she kindly opened her house to G both before and after school to ensure she was looked after and cared for at all times too.

Getting into the Christmas spirit

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Now, you might have guessed that our recent sojourn at GOSH wasn’t the perfect lead-up to Christmas I would have planned, with more highs and lows than those promised by a seasonal episode of Corrie, but please don’t imagine that our extended stay was completely devoid of any festive inspiration. Despite the noticeable lack of anything more than a mere nod to Christmas on the decoration front and the unseasonably mild weather that meant my trusty raincoat was relegated to the tiny locker provided for all the worldly belongings we might need during our 20-day incarceration, M and I did enjoy our fair share of festive activities, which helped infuse a little Christmas spirit into our otherwise grey days.

The Nutcracker – The Royal Ballet, Royal Opera House Covent Garden:

Our first treat was the chance to see the final dress rehearsal of Tchaikovsky’s “Nutcracker” danced by The Royal Ballet at the Royal Opera House, Covent Garden. It came as a complete surprise on that first Monday morning and was one that M and I just couldn’t turn down. Last year, M had been given tickets to see “Alice in Wonderland” at what was the first visit ever to the Royal Opera House for us both and I never even imagined that this year’s admission would see a repeat opportunity. M didn’t have to be asked twice and almost immediately started the countdown to when we could leave the ward and head off in a black cab to reach our destination. Timings were such that we were only able to watch the first half as we had to be back at GOSH for M’s lunch and the first of his food challenges, but he was delighted that we got to see the battle between the tin soldiers and the rats, his favourite part of the entire ballet, and we had the best view of it from our seats in the Royal box!

Christmas decorations & crafts – Play-workers and School:

M had the opportunity to decorate, make and create a plethora of decorations and Christmas-themed crafts thanks to both the Hospital school and the tireless team of play-workers linked to Rainforest ward. Since this time last year, the school has introduced a family session on a Friday morning, which allowed parents or carers to join their child in the schoolroom for an hour to enjoy an activity together. M and I spent the first week working with Fimo to create some tree decorations, a real blast from my past as this was a craft I loved doing as a child, and the second making what I think was called a “Spanish star” from paper. The latter was beautiful and I even managed to get it back home in one piece, where it was much admired by my Mum, who asked if we’d bought it from John Lewis! When not at school, M spent a lot of his time colouring-in a huge number of ceramic decorations provided by the play-workers on ward. Armed with a technicolour array of ceramic pens, M decorated sleighs, bells, gingerbread men and chinese dragons as well as a gnome and an owl pot, all of which formed the greater part of his gift to friends and family for Christmas. Not only did these activities help us feel a smidgen of festive spirit, they also provided a great distraction for an active 9-year old confined to the hospital buildings.

Carols by Candlelight, St George’s Holborn:

After one particularly long day on ward and a much-needed break from it all, I wandered back to the hospital to be greeted by the sound of carol-singing from outside the main entrance. I had been missing my weekly choir sessions at home and stopped to listen to the strains of carols that filled the air. This group had come from nearby church, St George’s Holborn to spread a little festive cheer and offer mince pies to anxious parents, extended families and harried medical staff as they rushed through the doors of the hospital. As I chatted to some of the members, I was invited to their Carols by Candlelight service on the evening of G’s birthday and was delighted to be able to attend, although sadly M wasn’t allowed to come with me. The service was beautiful – lit by candlelight, with smiling, welcoming faces all around me and filled with a peace that I really needed that evening. I sang every carol, grateful to be able to take part in this simple act of worship that proved to be invaluable therapy to me and which brought healing to my troubled heart.

Hospital school’s Christmas activities:

As well as the wonderful crafts mentioned above, the hospital school had a series of wonderful activities planned for the last 2 weeks of term. Sadly, due to the unforeseen hiccups that arose during his admission, M wasn’t able to take part in as many as he would have liked, but those he did do, he really enjoyed. From experiencing a Victorian Christmas with the V&A museum to themed artwork with the National Portrait Gallery and the beautiful Christmas service held in the hospital chapel and which we enjoyed so much last year, there was just so much on offer. M was particularly disappointed to miss the service as he had been asked to read at it, but the necessity of Klean prep made it impossible for him to attend. However, the one activity I put my foot down about and insisted he do was the chance to once again do some cookery with one of London’s head chefs. M loved every minute of that session and came out proudly bearing a box full of goodies from chocolate cupcakes to gingerbread angels and even 2 items he could safely eat – spun sugar and an apple swan!

The Snow Ball – GOSH’s Christmas parties:

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Martha from #GBBO

Every year GOSH put on a series of Christmas parties for patients and their families at nearby hotel, The Royal Britannia. M and I attended our first Snow Ball last year after learning about it during his admission and had such a good time that I vowed to make sure we repeated the experience this year and to take some extra-special guests with us if at all possible. Despite initial fears that the unexpected need for Klean prep part-way through his admission might get in the way, I managed to negotiate with his doctors and won him an afternoon’s reprieve from the stuff so we could attend. Once again we enjoyed all that was on offer – free food and drink for those who can eat, a soft toy for every child attending and a whole host of attractions including a Formula 1 racing car to sit in and sign, cupcake decorating, various photo opportunities, face-painting, science experiments and entertainment galore. M was particularly excited to meet both Iron Man and Martha from 2014’s GBBO and I would be hard-pressed to say who he was more impressed to meet! Thanks to the understanding and support of G’s amazing secondary school, Mike was able to bring her to visit M on that day too and so she was also able to come along and enjoy the party. Both children left with an amazing goodie bag each and wonderful memories of a great day in the midst of a difficult time.

Carol singing around the hospital:

This has to be one of my favourite Christmas events of our whole admission at GOSH. On our final Sunday there, Mike, M and I headed down to the hospital chapel for their Carols by Candlelight service. The chapel was packed out with patients, their families, staff and members of the local community who had come together to celebrate this service. As it drew to a close, and we disappeared back to the ward, I spotted that later that evening a group would be singing carols at various locations throughout the hospital. Having missed the carol services at both school and our home church, M had expressed several times that it didn’t feel like Christmas as we hadn’t enjoyed the usual buzz from all the preparations at home. This seemed like an ideal opportunity to find that missing Christmas spirit and given that all 3 of us love to sing, we determined to join this choir if we could. I later discovered that this group was from All Souls church, Langham Place and the members had travelled from various locations across the greater London area to spend an hour singing carols around GOSH. We were welcomed with open arms and it was wonderful to see M take part with real gusto as he was finally free of the Klean prep drip and starting to feel a little more like himself. The choir and musicians started in the main reception area before heading to The Lagoon and then on to 2 floors of the Octav Botnar wing to serenade patients and staff alike. It was a truly magical evening and a fitting end to the tension-filed admission we had experienced so far.

But that wasn’t part of the plan

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Without doubt, December whirled past in something of a blur. As I’ve already posted, we had been waiting for an admission to GOSH since last July and naturally it came when we were least expecting it. This admission had been planned by M’s dedicated dietician, who was hugely concerned by the continuing lack of progress we were making when it came to successfully reintroducing food back into his diet and she was keen to challenge him within the hospital setting so that they could see exactly what we were experiencing at home. Our initial discussions all those months ago were in terms of weeks: a lengthy admission, perhaps up to 6 weeks, to fully understand how M’s bowel and b plan ody respond when food is eaten; a daunting prospect when you have another child to love and nurture at home as well as a job to hold down.

Move forward 3 months and we reached our October outpatients appointment with no admission in sight and, due to the lack of long-term gastro beds at GOSH, no clear indication of when that elusive bed might eventually become available. Cue the recommendation of a radical rethink and a change of plan to a one week admission, followed by a series of further 1-week stays, scattered here and there throughout the year as and when there was a bed. The gastro team, keen to get him in before Christmas, felt this was our best chance of getting a bed any time soon and so we rolled with the punches and agreed to this amended plan, still not quite clear as to when the admission would actually happen. Over the following weeks, I spent valuable time fine-tuning the details with M’s dietician, agreeing what foods we would choose for challenges during our stay and discussing what the medical team were hoping to achieve through this process. The hardest part remained the lack of a long-term plan. The truth is that M’s continued problems with so many of the foods we’ve tried to introduce is baffling his doctors and until this admission was under our belt, they just didn’t know in which direction we’d be heading next.

By the time M was admitted on December 3rd, the plan had been tweaked again and unsurprisingly would continue to be so during the length of our stay. That one week admission suddenly became a 2-week stay and the 2 foods we had agreed to trial: potato and sweet potato, suddenly became 4: potato, egg, banana and salmon. I had already expressed some concerns about the plan to challenge him with 2 foods in a week and the increase to 4 over a 10-day period was now ringing some serious alarm bells in my head. Mike and I knew full well that the chances were that I would be bringing home a less-than-stable M just in time for Christmas and were resigned to rolling our sleeves up and spending the holidays Small-Changes working hard to bring him back to a healthy position ready for the new school term. We weren’t happy about this situation, but felt there was really no alternative; we had to give their plan a try in order to find some answers.

Despite those misgivings, the ones I had fully voiced to everyone and anyone who would listen from the minute I first met with M’s consultant and dietician when we arrived at GOSH and that I continued to express through every step of the following 10 harrowing days, we set off on this plan with the hope that we would find another safe food for him and perhaps even start to understand what has been troubling his gut for so many years.

What wasn’t part of the plan was the continued reluctance of the medical teams in hospital to listen when I told them M was beginning to show signs that all was not well with the food challenges and that he was reacting to the foods;

the plan didn’t anticipate the reality of M’s bowel being so unable to cope that it refused to work properly by the time we were 10 days into the 2-week admission;

and it definitely didn’t include 10 litres of Klean-prep (the worst bowel prep known to man) being continuously pumped into his tiny body over a 6-day period in an attempt to clear the resulting chronic impaction.

Nowhere in the master plan had I seen fair warning that, by day 14, I would be rendered utterly helpless and only able to sit, holding his hand and massaging his aching limbs, as M was left bent double from the cramps that were consistently hitting an 11 on the pain scale, where 10 was classed as the worst pain imaginable.

dancing-in-rain

Somehow we limped through endless hours of pain and frustration and dashed hopes, and we survived. Somehow we talked and ranted and sobbed and challenged until finally the medics acknowledged that things had gone horribly wrong, and we survived. Somehow we managed to stand strong and stay strong and stand our ground and refused to compromise on what we knew was in M’s best interest, and we survived. Somehow we rode out the fiercest storms and learned to dance in the rain, and we survived. Somehow we found enough humour in each day to keep the smiles on our faces and to laugh the smallest of giggles, and we survived. Somehow we got through the unexpected and started to find our way back to our normality, and we survived.

But that wasn’t part of the plan.

Another year over

Déjà Vu

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it-s-like-deja-vu-all-over-again-yogi-berra_design

déjà vu (noun)

a feeling of having already experienced the present situation

Last week, when I penned my blog post marking M’s 1st tubiversary, we were in the midst of a busy week involving Christmas music concerts (G), school Christmas fairs with a choir appearance (M) and my own choir concert; and I was trying hard to avoid an eerie sense of déjà vu that just refused to go away. At the back of my mind I was very conscious that it was one year on from our last GOSH admission and had hanging over me the reality of a long 22 weeks wait for a bed to become available for another one. I can smile about it now, just, but the stars really were aligned for last week’s outcome: my Mum was abroad again; my choir’s Christmas concert was planned for the Saturday night again; and G’s birthday was fast-approaching again.

So really, when you think about it, I shouldn’t have been surprised that the phone-call actually came when we least expected it. I think I’d been lulled into a false sense of security by the time we got to the Wednesday night. Last year our phone summons came at 1.30pm on the Tuesday afternoon and M and I had to be at GOSH by 11am Wednesday, so with no communication from them at all, other than the information passed on by our dietician that he was now top of the waiting list when Thursday dawned, I thought that was it for another week. I had my Friday planned – pack some birthday presents for G, pick up some bits and pieces for Christmas and pull together the items I’d want to take with me to GOSH when we finally had to head to London; plus some much-needed sorting out in the house to get it ready for G’s godfather and his family to visit for her birthday weekend.

I was, in fact, mid-conversation with a work colleague about what was going on re his admission, when the office phone rang and that was it. The bed was available now and we needed to head to GOSH and Rainforest ward as soon as we practically could. With so little notice, dropping everything to go there and then just wasn’t possible, but fortunately Mike and G were at home as she had an inset day, so were able to speed through a couple of loads of laundry and start pulling out all the essentials for a 2 week hospital stay. 7176037017_45f555b6cc_z I started contacting those who needed to know – school, work, his GOSH dietician – and somehow managed to put in another couple of hours at work before heading off to pick M up from school and finish the packing job. The 4 of us eventually set off from home and hit London perfectly in time for the tail-end of rush hour traffic, meaning we finally reached our destination at around 8.30pm.

M and I quickly settled in the bay on Rainforest, not quite the same bed as before, but close and with some old familiar and very welcome friendly faces amongst the nursing staff to help us feel at home. It was almost as if we hadn’t been away, even though it had been 12 months since our last stay. And that was when the real sense of déjà vu hit – we had been here before. It was not just the same situation, the same bed or even the fact that it was the same ward, but on exactly the same day too, something that we could never had anticipated, even though this admission came as no surprise at all.

A Numbers Game

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Tomorrow’s Tubiversary marks:

12 NG-tubes and the accompanying tube changes, which included…

…2 tubes pulled out by accident and 3 that broke unexpectedly;

4 pump backpacks worn out and replaced (and number 5 will be needed soon);

approximately 70 Feeding Friends stickers and 60 strips of Tegaderm used to keep that tube firmly stuck to the side of his face;

and at least 3 other tapes tried, tested and rejected;

1 Christmas, 1 Easter and several birthdays survived and celebrated;

Nearly 1 whole school year achieved with only a few days off;

1 week away in Cornwall enjoyed;

4 weekend trips planned, packed for and successfully negotiated;

5 safe foods and 2 safe oils identified and back in his diet, resulting in…

…around 15 new recipes adapted and perfected…

…4 new kitchen gadgets invested in and well-used…

…and impressively 16 restaurants found to be amazingly able and willing to accommodate the trickiest of dietary requirements

Not forgetting:

410 litres of E028 pumped

12 daily medicines reduced to just 3;

nearly 3kg of weight gained

5cms of height grown

And including:

12 months of stock counting, and rotating, and checking, and ordering

52 weeks of new syringes and dressings

365 days dealing with pumps beeping – …on…off…start…stop…blockages…settings…errors…”just becauses”!

8,760 hours of making sure the tube is tight enough, taped enough, in the right place enough…and not getting caught on anything

525,600 minutes of longing to be able to hold or stroke or kiss that precious little face without the tube getting in the way

Countless tears shed, hugs shared and frustrations vented

All amounting to…

One year of the best health ever

One boy and his bike

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It will come as no great surprise to anyone who knows us when I say that M is something of a daredevil. A true speed demon who loves nothing more than racing around at breakneck speed, sometimes with a frightening lack of regard for his own well-being or my nerves. I think his attitude to life could well be described as “why do anything at walking pace when you can run?” He’s always been the same and mastered climbing out of his cot and climbing up anything to hand (think window-sills, wardrobes and shelving units) from an early age. It was something of a shock when he swept into our lives like a whirlwind, especially after 2 peaceful years with G, who took a much more relaxed approach to just about everything in her early years.

Despite M’s continuing love of climbing, which now includes any tree he can get a foothold on, and his passion for being constantly on the go even until the wee small hours, he has struggled to come to grips with the more mechanical methods of moving around. His obvious clumsiness as a toddler and unquestionable difficulties in balancing in gymnastics meant that it came as no great surprise when a few years later he was finally diagnosed with dyspraxia and dyslexia. M didn’t particularly struggle with his hand-eye co-ordination, in fact his nursery commented on how impressed they were with his tennis skills at age 3, but fine motor skills, upper body strength and balance have all taken a lot longer to achieve and are things he continues to work on both at home and in school. spark_2-0_action_3 It took a little longer for him to become confident on his scooter, but his determination to succeed on a 2-wheel one, rather than the 3-wheel “easier” option, paid off and earlier this year he saved up enough money to buy himself the new one he’d been eyeing up in the Argos catalogue since last Christmas.

However, the one thing that had continued to defeat him was successfully riding his bike without stabilisers. For years, M has been telling us that all we needed to do was arrange a return visit to Canada so Grandpa could teach him how to ride his bike, just as he had G and the rest of their cousins; and there was little we could do to persuade him that he could actually learn at home. Despite M’s belief that Canada and Grandpa were the key to his success, we’ve continued to encourage him to practice at home and had even attempted removing the stabilisers a couple of times in an attempt to push him into giving it his all, but to no avail. When M had his NG-tube placed at the start of this year, he was initially a little more cautious about all things even vaguely adventurous and after a couple of failed attempts on his bike, it was relegated to a dusty corner of the garage to gather cobwebs.

I’m not quite sure what changed over the summer, but something obviously did. It may have been seeing G and Mike head out on some Saturday afternoon bike-rides, whilst he and I played together at home; it could have been his increasing belief that he can do anything he wants with his tube in place; and without a doubt, his improved balance that is so clearly evident as he scoots around and attempts trick-jumps on his scooter also played a part; but a few weeks ago he finally found the courage to take that last step. It came as a something of a surprise and was his response to my somewhat flippant comment one afternoon. He was chatting away to me as I was pulling the washing from the machine in our garage and talking about Mike’s need to tidy up in there. I told him that in terms of sorting out their outdoor toys, maybe we should get rid of his bike as it was just cluttering up the corner and could be put to better use by someone else. He took it as a personal challenge:

“Ok Mummy, I’m going to get on my bike and ride it now!“

and with that comment, on he jumped and wobbled his way out onto the driveway, with his toes barely touching the ground.

I watched from the kitchen door as M persevered to overcome this challenge that has been his nemesis for so many years. There was a look of absolute determination etched into his brow and he just kept on going until, with G by his side cheering him on, he finally managed to put both feet to the pedals and rode the length of our driveway. Elated with his success, both children shouted out in triumph, summoning Mike and me to watch in amazement as M grew in confidence in front of our eyes and completed his victory lap several times over. Since that day he’s improved in leaps and bounds, with his bike being the first thing he pulls out as soon as he gets home from shutterstock_17311288 school for a few bumpy trips around the garden. We always knew that his premature arrival in the world with the dyspraxia added on top would mean he might take a little longer to master certain skills, but that he would get there in the end; and we were proved right that his refusal to be beaten by anything would eventually lead to an even sweeter success when we least expected it.

7 years to diagnosis

Searching for an answer

Category Archives: Special Needs Parenting

What’s in a word

Reflections of an admission

There are no strangers…

Getting into the Christmas spirit

But that wasn’t part of the plan

Another year over

Déjà Vu

A Numbers Game

One boy and his bike