I’m sure I’m not the only working parent in the world who gets to the end of the latest school holiday with a sense of it being time to head back to work for a much-needed rest. The last 2 weeks have been undeniably busy, with a mix of work, play, holiday clubs, hospital appointments and tourist attractions to more than occupy our time.
Surprisingly, the first hospital visit of the Easter holidays was with G, who tumbled from her scooter and ended up with a painful wrist that needed a x-ray. Despite her best efforts to fracture her left wrist with 4 weeks to go to her SATS, G managed nothing more than a severe sprain, though she has also gained a ban from scooters, trampolines, trees and any form of gymnastics until those exams are done and dusted. Fortunately G is right-handed, so even these desperate measures didn’t get her out of the revision homework set for her time off school. We are extremely proud of the effort that she has made with her studies during the holidays as she did some work every day with relatively little fuss and it’s nice to know that the end is finally in sight!
Less surprisingly, our next 2 hospital visits were both with M. The first was his scheduled tube change at our local hospital and it went just as smoothly as the last one. Despite the continued problems we’ve experienced with the gastro team, the nursing team in the CIU (Clinical Investigations Unit) are amazing and have worked hard with us to find an approach to the tube change that makes allowances for M’s anxiety. The play therapists are on hand straight away to provide a much-needed distraction from all that’s going on by entertaining M with a bubble-popping game on the i-pad or a lengthy discussion about the Canadian Marvel superhero team, Alpha Flight. Our now-experienced team of Gill and Jo sort us a bed in a quiet area of the unit and encourage M to take some deep breaths of entonox before we even start to discuss the tube change itself. This time the job was done in an amazing 20 minutes, which included M removing his old tube himself, me counting to 10 in an array of foreign languages and only a fraction of the negotiations we’ve had to endure from M in the past.
We also spent a few days in London following M’s first outpatient check-up with his GOSH consultant since he had his NG-tube and started the elemental feed. I’m delighted to announce that, at long last and after an anxious few weeks, M has not only regained his pre-admission weight, but has also managed to put another kilogram on. Whilst we still haven’t progressed any further than his 3 safe foods, the move to elemental has done exactly what we needed it to and M is unquestionably the healthiest he has ever been in the last 9 years. The next step is an important one: to find more foods that he can eat without compromising this new-found good health. We are moving from a pure gastro clinic to a new one for those with “complex food needs”, which will mean he is seen regularly by both his consultant and our specialist dietitian, who will then work together, and with us, to plan the next steps on our new journey. The future is most definitely bright!