He immediately had and X-RAY and bloods to test for pancreatitis (rare, but serious) and an emergency surgical consult. Unsurprisingly, the X-RAY showed likely DIOS, again. Relief that it’s not something new, but also....sigh. I mean, yes, better the devil you know and all that - but a frustration nonetheless, we’ve been round and round with this years before. The good news is we are back home, with Gastrograffin again, to treat this over the weekend. But this is not a long term solution.
It is not right that he is needing pain relief and anti-nausea drugs most days. The vomiting has no rhyme or rhythm, but at the same time, it’s a constant and unwanted companion. It doesn’t appear to be linked to what he eats, how his lungs are, what treatments he takes (as far as we can gather), or his physiology (in that, Gastroparesis has previously been ruled out, and he’s eaten radioactive egg on roast (really) to check his digestive track, albeit a few years ago now, and that was all fine) - it’s just always there, making him throw up, on a average, maybe 3 times a week?
Isaac’s digestive problems rarely make it to the top of our priority list to focus on; because he has both bacterial and fungal lung infections to battle with concurrently, these preoccupy most of our time with the doctors. Also, Isaac is atypical in CF in that his weight and height are very good now. He was underweight as a babe, and we had years of supplementing his diet to boost his weight, but for the last 5 years, we’ve had no growth worries at all - perhaps because of this, his digestive problems rarely make it to centre stage in his medical reviews, and play second fiddle to his lung problems. But in the last few weeks he has missed probably 50% of school time due to vomiting, pain and nausea, and that is no quality of life. When we do get him into school, his is often sent home, looking pale and nauseas, and promptly throws up and then curls up in bed. We will be picking this back up with his team again, once we’re over this episode, looking for some longer term solutions.
In his usual style, Isaac took it all in his stride, pointing out his good veins for bloods, and we had a good giggle about a new dietician that he saw, who talks to him like he’s a pre-schooler (‘so Isaac, you able to swallow your tablets whole, how wonderful!’). Not quite sure how he would take the 50 odd tablets a day if he weren’t able to swallow them!
Today is Anouk’s 12th Birthday - our lovely Shnuk’s, could not love her more ❤️❤️❤️
