Tag Archives: impaction

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.