Tag Archives: disimpaction

Getting into the Christmas spirit

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:

11202603_10153139468196123_6743350134362470955_nOur 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. Christmas-decorations9Since 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:

23567358210_2327dd548d_mAfter 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 23104290053_5ffd34741a_zoffer 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 20151215_121720read 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. IMG_0069I 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

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 bplanody 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 holidaysSmall-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.

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.