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.