School – the hospital way

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One of my favourite memories of our pre-admission waiting time is when I asked M to tell my Mum what was going to happen once he was in hospital. I had, of course, expected him to explain, in depth, all he knew about the NG-tube and the pellet study, but roared with laughter when he said, in a small voice lacking in any great enthusiasm, “…hospital school…”

The first few days of our stay were dominated by the administration of the huge amounts of powerful laxatives and M felt so unwell that he refused to move from his bed. By the end of that first Sunday, however, the tedium of not being allowed off hospital premises had taken its toll and he was keen to head off to school on Monday morning. The hospital school accepts that the children may not be able to attend a “full” day there and is happy for any child to be there for as long as they are able to manage. Each day is split into 2 sessions: 10am to 12.30pm and 2pm to 3.30pm. They cover the basics of maths, literacy and science, but also throw in other subjects such as IT, art and even PE.

I discussed with the teacher there all of M’s needs concerning his dyspraxia and dyslexia and we talked about all he’d been learning so far at his home school. He was one of just 4 children in the Key Stage 2 group during his admission and was able to have a huge amount of one-to-one teaching as there were 4 teachers able to work with the group. They tackled his lack of enthusiasm for literacy by signing him on to the “Bug Club“, an on-line learning resource which tested his reading comprehension skills. Each time he was able to read a new passage and answer the questions correctly about what he had read, he received a virtual sticker and was moved on to the next text. He was set up with his own username and password to monitor the development he was making in class and what’s even better is that they have given us all the details needed for continuing with it at home.

M’s amazing chocolate Christmas creation

Every morning, M was keen to get up, get ready and get down to the classroom for the start of the school day. I have never seen him so keen to arrive at school and start working! He had a busy week there and he enjoyed every single moment of it. From History with the Victoria and Albert Museum to Cookery with the Executive Head Chef of the Hilton Hotel, it was a school week unlike any other. He even took part in the school’s carol concert in the GOSH chapel, where he read part of the Christmas story. It proved to be a great distraction from everything else that was going on medically and an amazing opportunity for those children who have to stay in hospital.

Round Two: the Pellet study and other adventures

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Courtesy of 123opendata.com

Once the NG-tube was finally in place, M and I then had 5 long days to survive the copious amounts of Klean-prep, senna and picolax that were pumped into his system to clear his troublesome bowel. Although we appeared to be off to a slow start, these powerful laxatives finally did their job and by late Monday afternoon, the gastro registrar was confident that we were ready to start the pellet study and a x-ray confirmed his opinion. I had already met with one of the gastro investigation nurses, so knew that the 3 pellets, containing different shaped plastic markers, were ready and waiting on the ward for M and all we needed to work out was how best to get him to swallow them.

Over the last year, we have made huge strides in getting M to swallow tablets whole and no longer need a spoonful of Grandma’s jam to help the medicine go down as he has conquered his struggles and now merrily swallows them with just a mouthful of water to help. However, there were 2 problems we now had to overcome: M’s new-found fear of swallowing capsules with the NG-tube in place and the fact that these pellets are of a size that even I would struggle to take easily, let alone a small child. The nurse suggested we resorted to mixing the markers into a couple of spoonfuls of jam and that was our first attempt. For reasons that will remain forever unclear, M found even this method difficult to manage and instead resorted to swallowing the pellets one tiny marker at a time. It may have taken considerably longer than anyone expected, but the pellets were taken and so round 2 of our admission was well underway.

The week should have been an easy one, as it was supposed to require nothing more of us than completing the pellet study, but unfortunately it was at this point that I had to brace myself and find the strength to weather an unexpected and turbulent storm. Despite both Mike and I having repeatedly made clear that we have almost no support from our local hospital and their paediatric gastro team, this information appeared to have got lost along the way and I found myself embroiled in a battle to keep M in hospital once the pellet study had started. GOSH felt sure that we would receive all the care and advice we would need from our local and nothing I said would convince them otherwise. I spent more hours than I care to remember fighting M’s corner and insisting that the consultants didn’t discharge him before the study was complete and the NG feeding started. The pressure was huge, both on me – as I talked, discussed and cried my way through numerous meetings with nurses, doctors, dietitians, psychologists, PALs workers and indeed anyone else who would listen – and on Mike – as he sought to juggle the challenges of working, looking after G at home and supporting M and me whilst we were several hours away and only contactable by phone.

It quickly became evident that GOSH simply could not conceive that we could be as lacking local support as I was asserting we were and I have no doubt that they were beginning to view me as something of an overwrought, overtired, over-emotional and somewhat neurotic mother, who was unbelievably arguing to keep her child in hospital, when most other parents were trying desperately to get their children discharged before Christmas. By the end of the week, it had all come to a head and I was at my wits’ end, but was finally vindicated late Friday afternoon, when our local dietetics team refused in no uncertain terms to take on M on a shared care basis with the GOSH dietitians – an entirely new experience for GOSH, though sadly an all too familiar one for us.

Despite all the heartache and distress this unnecessary battling caused, there was some really positive light at the end of the transit study tunnel. The final x-ray on Friday indicated that M’s bowel is working more or less as it should. It may be a little slower than ideal, but the markers had moved through M’s system and the consultant was delighted with this result, which means that the bowel is currently doing its job. We really couldn’t ask for anything more. So, the conclusion drawn is that it is the complex and multiple food allergies that have been causing M’s diarrhoea and other symptoms because of his underlying condition, EGID and the final step is to identify these as accurately as possible.

Here’s to 2015

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That’s another year done, more adventures experienced and new lessons learned. We’re starting 2015 with a positive outlook – the switch to NG-tube and elemental feeding has already started to see some health improvements for M and we finally have a plan for moving forward that will be looking for the root cause for some of his health problems. Both children are happy and settled at school and G is looking ahead to moving into secondary school in September. We’ve met and made friends with several of the lovely FABED families and have been able to help raise funds and awareness for this charity and the condition it supports. I’m not sure what 2015 holds for us all, but, if nothing else, I’ve learned to hold tightly to my hat as it’s certain to be a bumpy ride!

Wishing you all a happy, ssuccessful and peaceful 2015. May your wishes and dreams be fulfilled.

Courtesy of connectsociety.org

Courtesy of telegraph.co.uk

Courtesy of minionslovebananas.com

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Just some of the children’s creations

This is definitely a t-shirt us #EGID parents need!

The First Hurdle

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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

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

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

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.

Merry Christmas!

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May your Christmas be filled with love and laughter; times of happiness and of reflection; family and friends…

…and may 2015 be a year that brings new hope, understanding and peace.

Christmas decorations with a M twist

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Whilst we are processing all that has happened in the last 3 weeks – think hospital admission (M), 11th birthday (G), 15th wedding anniversary (Mike and me), Carol services x 4 and metres of wrapping paper – I thought I’d share some quick snaps from a Christmas project that M undertook before he headed into GOSH.

The challenge came from school – to create a unique Christmas tree decoration for a competition – and M knew exactly what he wanted to make. A couple of weeks earlier, we had been watching a Christmas film (don’t ask me which one as I honestly have absolutely no idea, other than it starred Tori Spelling and was loosely based on the Dickens classic “A Christmas Carol”) and he had been fascinated to see the children threading popcorn into a garland to hang onto the tree. He was adamant that this was what he wanted to make for the school competition, so Mike popped a saucepan of corn kernels and M and G sat down at the coffee table to start their threading.

Bedtime arrived quickly and M asked if he could continue the job upstairs once he was ready for bed. As M is rarely asleep much before 11pm on any given night, I swiftly agreed, knowing that this would be a great activity to keep him occupied and stop him bothering G too much, as well as a sneaky way to get another finger exercise to improve his fine motor skills into his day. Whilst M was upstairs threading his garland, I was downstairs looking for simple instructions on how to make loom band candy canes to add an extra festive twist.

Six feet and six candy canes later, the garland looked amazing and M was proud to enter it into the competition.

(Oh, and that Christmas film we’d watched? – A Carol Christmas. Well, I couldn’t leave you wondering!)

The Mystery of the Missing Bed

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Courtesy of http://www.enidblytonsociety.co.uk

It sounds like one of the Enid Blyton stories that my children have been listening to at bedtime recently. M and G have been loving the adventures of Fatty, Buster and the rest of the Five Find-outers gang, but this was a mystery set to challenge even the hardiest of intrepid adventurers.

Having received our summons to GOSH less than 24 hours earlier, and laden down with suitcase, backpacks, Lego advent calendar and the ever-present Cat, M and I found our way across London, through those infamous front doors and up to the long-term gastro ward. We approached the nurses station and were greeted by a bemused looking senior staff nurse, who seemed uncertain as to who we were and why we were there. I gave her M’s name and that’s when a look of complete panic swept across her face. His name wasn’t on her master list, she hadn’t been expecting him and at that precise moment of time, there was no empty bed ready and waiting for him.

With profuse apologies and a promise to get hold of the ward administrator, the nurse in charge and the bed manager, M and I were left, with our bags, in the somewhat small and cramped playroom, whilst the mystery of M’s missing bed was investigated. After the early start to our day and an emotional goodbye to G, I barely held it together as I called Mike with a slight hysterical edge to my voice. The play co-ordinator found a circuit board kit to entertain M and I got chatting to another patient and her Mum, who had just been turfed out their room and were waiting to hear where they were being moved to. We all sat there for nearly 2 hours, whilst those in charge negotiated, discussed and settled the bed situation for all involved.

Courtesy of en.wikipedia.org

I might never know why the mystery of the missing bed happened or how it was resolved to everybody’s satisfaction, but I’m delighted that, thanks to the hard work of the nurses and the obviously determined look on my face that meant I wasn’t going to take no for an answer, M’s bed miraculously appeared in the “bay” and we could finally get ourselves settled in for the duration.

In Mummy’s arms

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Courtesy of susanstark.net

I lay awake in the early hours of this morning, watching my beautiful babies peacefully slumbering alongside me in the bed. I know that this morning, more than any other morning in recent days, both children needed the comfort of being in Mummy’s arms and resting with me. After weeks of (im)patient waiting, yesterday afternoon the phone-call finally came and at the remarkably short notice that I had been anticipating. I had less than 24 hours to book train tickets, pack a case, prepare crib notes for Mike and contact everyone who has anything to do with M to let them know about his hospital stay over the next 3 weeks, as well as the everyday tasks of cooking dinner, making packed lunches and sorting school clothes for the next day.

Whilst I whirled around the house in a haze of slightly panicked chaos, the children spent their last evening together for a while in typical fashion – hurtling from cuddling up to each other to threatening to scratch the other’s eyes out in a matter of minutes. M was particularly hyper and could barely sit still in his seat. Instead, he bounced, jigged and ran around the house like a mad thing, the clearest sign that his stress levels were high and gradually rising even higher.

We had a “last supper”, together as a family. One chosen by M. His consultant had suggested that he could relax his diet just a little before coming off food altogether and so Mike and I had expected him to choose something like fish and chips or Chinese. Instead, he requested the item that had been at the top of his Christmas list this year – an egg. So, the four of us enjoyed a poached egg on toast as well as a “dippy” egg with toast soldiers. It was a simple meal, but one that he heartily enjoyed and devoured with gusto.

Finally bathed and in their pyjamas, Mike read them a bedtime story, whilst I ran through my mental checklist and gathered up the last few bits to accompany us to London. G settled to sleep as quickly as ever, whilst M was awake until 11pm. He finally slept, snuggled into my side, with my hand tightly gripped in his much smaller one. Mike carried him back to his own bed and then we tried to sleep ourselves, knowing that, for me in particular, sleep would be a precious commodity over the next 3 weeks on a hospital ward.

I’m not to sure what time G crept in to our room, but I was suddenly aware of her presence on my side of the bed and she was quick to climb in for a cuddle as soon as I invited her in. My big girl doesn’t need my comfort so much these days, especially at night, but tonight she needed to feel Mummy near and I loved having that opportunity for an extended cuddle. Less than an hour later, just as I was drifting back to sleep, I heard the sound of footsteps running across the landing and in climbed M, snuggling down in his preferred position between Mike and me.

Courtesy of paediatricsconsultant360.com

Our bed isn’t really big enough to fit 4 these days, but tonight, of all nights, I relished the quiet opportunity to have our whole family together, in peaceful harmony; something that won’t happen again until M and I return from our adventures at GOSH,

Stir-up Sunday

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Courtesy of telegraph.co.uk

Did you know that the last Sunday before Advent is known as “Stir-up Sunday”? That it’s thought that this tradition was introduced to Victorian Britain by Prince Albert? Did you realise that the Common Book of Prayer is the source for the nickname as the Collect for the Day starts “Stir up, we beseech thee, O Lord“? And I love the idea that hearing those words whilst in church on that Sunday, meant that cooks, wives and servants would be reminded that it was time to get started on preparing the Christmas pudding.

The reason I know all this is that this year Stir-up Sunday fell on November 23rd and I went on-line to track down its origins, whilst G and M helped my Mum create a culinary masterpiece worthy of a M-friendly Christmas. My Mum was given this recipe a couple of years ago and it proved relatively easy to convert to suit our allergy requirements. The children have enjoyed making it and this year was no exception, even though we know there’s a good chance that M won’t be able to eat it by the time Christmas arrives. The recipe was also a great opportunity for M to practice his reading skills and he did a sterling job in making sure that all the ingredients were present and correct.

With all the ingredients in the bowl, the whole family took their turn to stir the mixture and make a wish. M took a little convincing not to share his wish with the world, but the pudding was made and is now waiting for Christmas day. I’m assured by those in the family who enjoy Christmas pudding, of which I am most definitely not one, that this is a great recipe and that the pudding is delicious as well as being allergy-friendly. Definitely one for the cook-book!

Waiting

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Patience is a virtue, or so the saying goes. I’d always thought of myself as a relatively patient person, but maybe not. And definitely not when it comes to waiting for a hospital bed to become available and for testing and treatment to start. Another week of waiting is over and a new one is about to begin.

#awatchedphoneneverrings

7 years to diagnosis

Searching for an answer

School – the hospital way

Round Two: the Pellet study and other adventures

Here’s to 2015

The First Hurdle

Merry Christmas!

Christmas decorations with a M twist

The Mystery of the Missing Bed

In Mummy’s arms

Stir-up Sunday

Waiting