Preparing for this summer’s holiday to Portugal went well as we completed the Pellet study with M and I finally answered the question of how to carry all of M’s medicines and foods without paying for an extra bag. So, all I needed to do in the last two days was pick up our holiday money, pack the suitcases and speak to GOSH about the test results from the abdominal x-ray.
Needless to say, the first two list items were quickly ticked off and I even managed to fill the extra suitcase for M without forgetting anything essential. Tracking GOSH down and speaking to them sensibly took a little longer. I was anxious to discuss the results of the Pellet Study and what the next step was before we went on holiday, especially given that M’s move up to his new school was imminent soon after our return. The registrar I finally spoke to on the Friday morning had a real mix of news for me.
The good news was that the x-ray showed that M had passed most of the radiopaque markers – his x-ray was a mix of images 1 and 2 – which suggested that there was no real issue with his gut motility. The bad news was, that despite 12 days on an increased level of Movicol, M was still heavily impacted. What wasn’t clear was whether we had ever successfully emptied his bowel or if he had become re-constipated during the 5 days he was not taking the Movicol during the study.
The next decision was not an easy one to make, especially with a week abroad on the horizon. We had to continue with the Movicol, taking 4 sachets daily for the week we were away, which would hopefully keep things moving and empty his bowel out as was so desperately needed. Both the registrar and I felt it was likely that the 4 sachets would be too much for M’s system, but we really had no other choice and reluctantly I agreed, with a follow up phone-call planned for the first Monday back home. Into the suitcase went the required sachets and extra packs of pull-ups to see us through the week.
Despite the challenges we knew this would bring, we were determined to enjoy the much needed break and the sun. We set off with plenty of time to spare “just in case”, breezed through check-in and customs, survived the 2 hour wait to our flight and eventually landed safely in Faro. An hour’s taxi ride to the resort, a quick late night tuna pasta dinner (courtesy of the supply suitcase) and we were into bed for a good night’s sleep before our holiday started properly.
The week was amazing. The kids loved every moment of both the beach and the pool and we were all amazed at how much their confidence had grown in the last year. M revelled in splashing about and jumping waves, which was something he wouldn’t do the first time we went just 2 years ago. He was also brilliant at wearing a pull-up under his swimming trunks to avoid any unwanted problems in the water. It was far more challenging to change him because of the combination of damp bodies, tight-fitting pull-ups and wet trunks, but we survived it.
He had his moments and we had a couple of major melt-downs as he let out his frustrations about his condition and all that was going on. Unfortunately, Mike suffered the brunt of this as he’s not usually the one on-hand all day, but he survived it too. The upside is that it gives more ammunition and examples to pass on to the CAMHS team when we see them later this month to argue the case for M needing more support to cope with his emotional and psychological well-being.
We even managed our meals. This year we chose to eat breakfast and lunch in our apartment every day, rather than venture to the breakfast buffet provided at the hotel. It was a difficult decision because both children love the opportunity to chose from the vast array of food available, but we knew that it would be a far too limited choice for M. Instead we ate out every evening at a number of local restaurants along from the hotel. One of the best things about eating out in Portugal is that it was surprisingly easy to accommodate M’s food restrictions. His love for most things fish and seafood meant that we were able to order fresh fish that was cooked in olive oil with a side order of chips and he was satisfied. We found that most of the restaurants were helpful in preparing prawns or fish without any sauces and we skipped dessert as none of us needed it.
As expected, the movicol made the week difficult, but it made a big difference to be dealing with all the stresses and strains in a sunnier climate. We all needed the break from the daily grind at home and I came back feeling refreshed and ready to tackle the challenges of the new term.
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