“I think we can all agree that this admission has been a complete disaster”

Mike and I could have been forgiven for expecting to see Craig Revel Horwood in the room, but in fact those were the opening words of M’s consultant at our meeting on day 13 of his admission. A meeting attended by on-call gastro consultants, ward registrars, dietician, nurses and the gastro psychologist and where not one of them disagreed. When those are the words you hear uttered by one of the senior gastro consultants at Great Ormond Street Hospital, you know that things have gone really badly wrong. To say that Mike and I were surprised to hear them offered as the opening gambit is an understatement: we had gone into this meeting prepared for battle, expecting to have to defend our opinion that M’s current deterioration was due to the food challenges, that same discussion I’d been having for the previous 10 days with that same multitude of medics, and without warning they appeared to have come round to our way of thinking.

Since M’s discharge, lots of people have asked about the admission and what happened whilst we were in London. The plan for the original 2-week admission was to trial 4 foods whilst we were there – potato and egg, which we hadn’t done at home – and banana and salmon, which we had, but he had failed previously. The original expectations as discussed and agreed with both his consultant and dietician were that he’d start to show a reaction within 48 hours of starting each food and so the admission was to look like this: 3 days observation to understand his “normal”, 8 days of food challenges – a new food every 2 days whilst continuing with the previous ones – and then 3 days to assess before sending him home. This approach of challenging with 4 foods in 10 days was ambitious to say the least and left no wriggle room for recovery if he failed at any point. Given we are used to spending at least 5 days slowly introducing a new food to M and then expect to take a week, if not longer, to get back to normal, it quickly becomes evident why things didn’t go according to plan.

3 days observation – these happened, but they hadn’t allowed for just how upset M would be by the short-notice of his admission. As I had packed our case having picked him up from school, I could hear him sobbing in the other room and discovered him lying on G’s bed, wrapped in her arms as he cried about missing her birthday and being away from home in the lead up to Christmas. This traumatised him so much that, as for so many people even without gastro issues, his tummy/bowels/digestion were upset and didn’t behave as the “normal” we’d got used to over the last 12 months. This was to later prove a problem as the ward doctors insisted he was constipated on admission and struggled to accept that these new foods were in fact the issue.

8 days of food challenges – we started with potato at a speed and quantity that I just couldn’t comprehend. There was no go-slow and gently increasing his intake here, instead he was allowed to eat “as much as he wants” and after 2 years without potato, believe me he went at it with gusto, even eating 6 roast potatoes at one sitting. Within the first 24 hours he started to show reactions to the potato  – severe reflux, tummy aches, a constant need to wee and he started to soil again, something he really struggled with on an emotional level. The ward doctors refused to believe he could be reacting so quickly and their repeated mantra to me soon became “it’ll take 4-6 weeks for him to show a reaction” and “he just needs to push through this“. As each food was introduced, things got worse and worse as he was now completely incontinent, a position we hadn’t found ourselves in for a year. All the signs of his bowel starting to shut down were there as he was weeing for Britain, his appetite was dropping off and his energy levels started to wane and I kept saying that these indicated he was failing the foods, only to be told that it wasn’t possible. They were palpating his tummy twice a day and insistent it felt fine and every conversation ended with “it’ll take 4-6 weeks..yada yada yada…” – by now you get the picture! By day 8, they finally agreed to x-ray and, lo and behold, he was chronically impacted. This x-ray was apparently one of the clearest they’ve ever seen showing it – solid black throughout his colon due to the blockage.

Then came the heated discussions about why this had happened. They were insistent that he must have come into hospital constipated, though how a child who goes every day can be constipated they’ve still to satisfactorily explain to me, and I was equally insistent that he wasn’t. We ended up agreeing to disagree as neither of us could prove it either way, though it has now been noted that should M be admitted again, they will x-ray at the start of the process to make sure we all know the state of his bowel.

3 days assess/discharge – became 6 days of powerful bowel prep continuously via M’s NG-tube plus additional senna for the last 3 of those as things simply weren’t shifting as hoped. I have honestly never seen him so ill as he was by the end of that week – bent double from the cramps, crying, refusing to move from bed or engage with anyone, lethargic and rating his pain at an 11 or 12. Throughout this time he was expected to continue all 4 foods, just in case his obvious bowel reactions were actually nothing to do with the challenges and they had introduced a daily dose of senna to keep things moving, something we hadn’t needed at all during the 12-months being tube-fed.

We finally came home after a further 5 days of “recovery” time in hospital and decided to stop banana and salmon straight away as well as the daily laxative. Things slowly started to improve and we made the decision to allow him to have egg and potato in small amounts for a few more days over Christmas. However, since the 27th we’ve stopped those too and gone back to just his 5 safe foods – and he has recovered amazingly. No tummy aches or pains, as much energy as we’re used to, back to regularly using the toilet with no issues and much, much happier in himself. The medics would no doubt argue that it’s difficult to pinpoint when things started going wrong, but to me it seems obvious: the introduction of these 4 foods is undoubtedly the root cause of his bowel problems in GOSH.

That’s the truth behind our December admission and yet to many I’ve no doubt it will seem that it all went incredibly well. You see, the one thing that was achieved during our stay was that M’s NG-tube was removed and my little superstar has proved us all wrong by accepting the challenge of drinking his feed head-on and is drinking a much-reduced volume on a daily basis. M’s consultant was very determined to get the NG-tube out and at times it felt to us that it was her sole focus for the duration of the admission, which was difficult to cope with when we were needing and hoping for so much more. Achieving that has been amazing, but he hasn’t suddenly started eating a “normal” diet, in fact he’s exactly where he was before we went in, and the need for the elemental feed (E028) is still very much there. The flip-side of losing the tube is that M’s EGID, multiple food allergies and limited diet whilst not diminishing in any respect, have once again become hidden, a set of invisible illnesses, and we have all had to adapt our expectations by keeping that knowledge firmly in the front of our minds. That single small step forward simply does not cancel out the many massive steps backwards that happened whilst we were in hospital and doesn’t acknowledge the harsh reality that very little else in his life has actually changed.