Tag Archives: emotional struggles

“Barry Broken Bones”*

It’s currently 5.10am and I’ve been sitting awake on the surgical ward of our local hospital since M woke in extreme pain at around 3.15am. He has finally dropped back to sleep, but it looks like I’m going to be surviving the next 24 hours on just 3 hours of unsettled sleep. The last 24 hours have passed in a blur and certainly our day didn’t end as it started out. big-play-barnWe’re halfway through the Easter school holidays and, with my Mum on her travels once again and me committed to work, Mike has taken some time off from his job to be on childcare duties for the duration.

The plan for the day was a popular one with M and G alike – drop me off to my office, back home for a quick breakfast, packed lunch prep and bag pack, and then head off to a nearby play place and farm – one of M’s all-time favourite places to visit when time allows. Day out done, it would be home for a spot of homework and maybe some TV before the return journey at the end of my work day to bring me home just in time for dinner. Timed to perfection, it promised to be a fun, busy and productive day for all concerned. The first I was aware that something untoward had cropped up was the phone-call to my office during lunch-time. A phone-call from G. The type of phone-call no parent wants to receive out of the blue:

Hi Mum, it’s me. Dad just wanted me to call and let you know we’re having to take M to hospital…”

Cue vivid flashbacks to a sunny day in Cornwall when M was 4 and the sounds of G pounding on the car window whilst Mike carried a screaming M in his arms and the ensuing drive in something of a blind panic to the nurse-led unit at Bodmin before an ambulance trip for 2 to Truro.

The partial facts I was able to extract from her at that point told me only a fraction of what I wanted to know, but it was enough to cause my heart to lodge itself in my throat and remain there for the rest of the day. With the news that M’s leg had been hurt and needed to be checked in A&E, the remnants of my lunch were pushed to one side and I worked hard to suppress the anxiety that I could feel creeping up in an attempt to catch me unaware all too frequently. I spent the rest of my afternoon in a state of mild shock, feeling nauseous about what might have happened and watching the minute hand tick slowly by as the tension started to build. It didn’t help that neither my office or our local hospital has great mobile phone signal meaning that it was near impossible for Mike and I to communicate in any effective fashion. I did manage to somehow stay focused enough to complete my day and finish some work during those long waiting hours, though the quality, accuracy and sense of that work will only be revealed once I’m back there. After what felt like hours, I finally gave in to my anxieties and called A&E, where, by complete chance, I managed to catch Mike just as he was about to leave with the children. Despite M’s severe pain, the nurse assessor felt confident that the lack of swelling and no discernible sign of a break on thorough examination indicated it was just badly bruised and some judicial doses of painkillers would soon see him back on his feet.

Now, the fact that I’m currently writing this by the light of my phone on a noisy hospital ward will probably tell you all you need to know and that the story didn’t end there. Not even close. By the time, I had been rescued from my office and we reached home, M was unable to put any weight on his foot and was screaming from the excruciating pain. He was rating his pain levels at approaching a 10 out of 10, which we knew meant this was far more serious than originally thought and his pale, strained face reflected that fact. IMG_0301[1]With very little debate and a hurried phone-call to A&E, we were soon back in the car and heading to the hospital, this time determined not to leave without an x-ray. The nurse assessor admitted on the phone to Mike that she had been reflecting on M and regretting discharging him without an x-ray, so for once we were happy to be visiting our local A&E again.

Within the hour, and obvious from the very first x-ray, we had our answer: M has a nasty spiral fracture to his left tibia. That has led to a full length leg cast from mid-thigh to toe, a considerable amount of tramadol, paracetamol and ibuprofen and an overnight stay for 2 on the surgical ward for observation. It’s been a difficult night as once again G has been sidelined whilst M heads into hospital, though this time the proximity to home has made it so much easier and she has been a superstar throughout. M’s pain has reached new levels of awful, though even then, as he lay sobbing in his hospital bed, he wouldn’t rate it as more than a 9, or possibly a 10, proving once again how accustomed to chronic pain he has become.

IMG_0302[1]The next few weeks are going to be tough and not just because of his broken leg. M is going to have to find a fortitude he’s never had before as he misses out on a much longed-for dream because of it. He is extremely disappointed, but courageously trying to take it in his stride, with the smile on his face we all know and love. I can see the hurt deep in his eyes, but we will hope that something even better comes from this disaster. What saddens me even more is that he really has been the victim in this situation. His broken leg is not due to careless or reckless behaviour on his part, but down to the action of another child. A child who probably has no idea of the physical damage to M’s body, let alone the other far-reaching consequences of his violence towards my child. I’m still reeling from the shock that a child of a similar age could cause such injury; disturbed that a family could leave without checking on his well-being and left hoping that my children don’t lose their beautiful skill of making friends of strangers wherever they are, even though the consequences can unbelievably be so devastating. I fear that this incident will leave an emotional scar on them both that will take a long time to heal.

*M’s leg might be broken, his dream in tatters and his confidence knocked, but at least 1 thing is still in tact – his sense of humour. In the wee small hours, whilst floating on a cloud of entonox, M decided that this needed to be his new name! That and he’s keen to investigate the price of a cow…

“Elementa(l)ry, my dear Watson”

(with profuse apologies to all Holmes fans out there, but I just couldn’t resist!)

As we head into our 5th month of E028, the positive impact of the elemental diet on M is plain to see.  Family, friends and even casual acquaintances have commented on his improved health, behaviour, appearance and overall much happier demeanour.  We have seen glimpses of the happy-go-lucky, confident and outgoing child he can be when constant pain is not plaguing him and we have celebrated that success with him.  We’ve even embraced the somewhat daunting prospect of food trials despite the lack of useful advice we were originally given and have ploughed on regardless, surviving the highs and lows of this latest rollercoaster ride. Believe me, there have been plenty of both.

The highs have been encouraging; 

highsWe have successfully reintroduced rice, chicken and cucumber to his diet and he’s loving being able to eat something solid once again.  I’ve adapted, tweaked and sometimes created from scratch recipes to give him a range of meals that make meal-times more exciting than just plain boiled rice, grilled chicken and a few slices of cucumber 3 times a day.  We’ve even found a new favourite in rice noodles, something he would never eat when he was small and, thanks to the advice of 1 kind reader, I have even managed to lay my hands on a bag of the elusive rice pasta and he’s enjoying the variety to his diet.  The bonus of finding some amazing allergy-friendly restaurants earlier this month was a real boost and will make a big difference to us all.

M has stayed positive and has very much been involved in making the decisions about what foods he trials next.  We are working closely with our GOSH dietitian to choose our hit-list of foods in a balanced manner and I speak to her every 2 or 3 weeks to provide an update on our progress.  Even better, she is constantly contactable via e-mail, which has given me huge peace of mind as I know I can ask her any questions I might have and she will always come back to me by either phone or email, even if it’s just to say she’s looking into it and will let me know.  We’re once more on a small break, but are looking forward to attempting carrot, corn and apple over the coming few weeks.

And the lows have been exhausting.

exhaustionmanageI never realised just how exhausting the process of food challenges would be and that’s on all levels: physical, mental and emotional.  Each new food starts with the excitement and hope that it will be a safe food for M and managing expectations has become key.  It feels easy at the moment to be downhearted as we have had 4 fails – pineapple, pork, sweet potato and banana – and a question-mark over the 5th – salmon; but it’s critical we stay positive as there are an awful lot more foods for M to try, and every success brings with it many more options for meals.  Unfortunately, every fail leads to disappointment and discouragement and we have to pick ourselves up, brush ourselves off and look forward to the next one as best we can.

The need to be constantly alert to the risks of cross-contamination during food prep, as well as ever-vigilant about rogue additions to lists of ingredients and being constantly alert to any signs of a reaction in M, requires a stamina I didn’t know I had.  That is something I’m sometimes finding it hard to hang on to.  Whilst we are almost desperate to successfully introduce another ingredient to our meagre list, it’s become clear that we have to do it at a pace that suits M’s pernickety digestive system, and that seems to be a very slow rate indeed.

SHERLOCK_HOLMES_-_01-743978However, despite the exhaustion and the blood, sweat and tears shed in the name of finding another safe food, the future is looking bright and M’s better health gives us all a reason to keep going, even when it seems tough.  To have him in the best health we’ve known for 9 years means that our decision to go elemental really was…well…”elementary, my dear Watson.”

The First Hurdle

Our GOSH admission had three key stages, the first of which was to dis-impact M’s bowel and prepare him for a repeat pellet study.  We knew that when the original transit study was done at our local hospital 18 months ago, he was chronically impacted and there was some debate over whether the results, that suggested his transit was relatively normal, were accurate or not. My honest opinion was that he was not struggling with a slow transit colon, but the gastro team at GOSH wanted to be certain and were more than happy to admit him for this test due to the issues we’ve experienced with our unsympathetic local hospital over the last 12 months. My instinct was that nearly 9 years of unrelenting diarrhoea meant that there had to be another root cause for his problems that was still waiting to be discovered and it would just take some persistent looking to find it.

Courtesy of ebsta.com

Courtesy of ebsta.com

Unfortunately, the first hurdle – after the resolution of the whole missing bed saga – proved to be far tougher than any of us had anticipated.  After his amazing courage in facing all the health and medical challenges of the past year, and despite knowing that he needed to have a NG-tube, M showed just how stubborn he can be and steadfastly refused to co-operate with the nurses who were trying to pass the tube.  Wednesday evening saw 5 different nurses, 4 attempts, a flurry of unsuccessful negotiations and 1 small boy, who pulled the last 2 attempts out himself because, according to him, the nurses weren’t listening when he asked them to stop and then told them to go.  Having kept the other occupants of the 4-bed bay awake until past midnight with his cries and screams, we all finally admitted defeat and decided to leave it to the next day’s nursing team to remedy the situation.

Thursday morning arrived far too quickly, with a disturbed night’s sleep for M and an uncomfortable one for me.  We talked about the tube and the need to have it in place as soon as possible so that we could start on the first round of treatment, the dreaded Klean prep – a highly effective laxative that would start the process of clearing his system.  M knew and accepted all the reasons for the tube, but at the heart of the matter was the fact I had a small, scared 8 year old, who had endured a great deal since his scopes last October and was evidently close to saturation point.

Courtesy of The Royal Ballet/ROH Johan Persson

Courtesy of The Royal Ballet/ROH Johan Persson

Even the lure of tickets to go to see “Alice in Wonderland” performed by the Royal Ballet at the Royal Opera House, Covent Garden that very afternoon looked unlikely to be sufficient draw, but my boy’s love for all things theatrical combined with my own enthusiasm for going to see anything at the Royal Opera House eventually overcame his worst fears and won the day.  He agreed to let one of the doctors pass the tube and with 4 of us holding his head, arms and legs, another distracting him whilst it happened and the doctor doing the deed itself, we finally got the tube in place.  With that hurdle tackled, M and I rushed to get ourselves ready and a bag packed for our trip to the theatre.  We went by taxi with another little girl from the ward and a nurse and arrived just in time to take our complimentary seats in a box before the ballet began.  The performance was an amazing visual feast and proved to be a more than adequate distraction from all the tears and trauma of the morning.  M loved the outlandish costumes of the Mad Hatter and we had a lot of fun trying to work out which of Alice’s family and friends were depicted by each of the fantastic characters we met throughout the rest of the ballet.

Courtesy of The Royal Ballet/ROH

Courtesy of The Royal Ballet/ROH

Naturally, as I’ve come to expect when dealing with anything to do with M, nothing was as straight-forward as we might have hoped as we headed into that all important first full day of admission.  The stress of the tube placement led to him being violently sick within 10 minutes and he spent the rest of the day retching and bringing up bile, meaning the Klean prep couldn’t be started until much later in the day.  He reacted to the Duoderm, a dressing usually used to protect the fragile skin of the face by forming a barrier between the cheek and the tube and tape, which meant there was no alternative but to tape the NG-tube directly to his face.  The final straw came in the middle of the night, when after I’d finally got my tired chap to sleep, the quantity of the Klean prep being pumped in at the speed it was upset his system and he woke to be sick for the second time in less than 24 hours.

By the time Friday morning came around, we were both feeling emotionally fragile and physically exhausted and M refused point-blank to move from his bed.  We sat quietly on ward, with M plugged into the television via his headphones and I immersed myself in the escapism of a good book.  It had been a bumpy start, but finally we were on our way.

 

Eating my words

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

Courtesy of connectsociety.org

Courtesy of connectsociety.org

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

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

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

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

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

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

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