Kids had a ball yesterday. Presents galore, family and friends round. It was more G&T's and prosecco than Christmas TV and charades this year, so today is very much about family, films and securing the best spot on the sofa (although Obie and I had a lovely long walk by the river too. I needed that).
Isaac had his CT* scan two days before Christmas, and we found out some results that day (no news usually is good news after a scan, so a call this soon is gonna set off alarm bells). A registrar called to say they had a positive result, which at first I thought was just good news, all was positive, right? But sadly no. It was positive as in; they positively found something amiss.
We're not quite sure what this problem will mean for him yet, but most likely he will be scheduled for another, more detailed scan quite soon. He is also being referred to a new Gastro team. More on this when we know ourselves. This issue may be completely separate to his having CF and the DIOS episodes he has been having; a whole new thing.
It's always horrible finding out that something is wrong, and hell, life really has dealt him some pretty shitty cards lately, but on the brightside we've discovered what is causing him all this pain, and that's gotta be good. He has had a good few days, less sickness, but more nausea and stomach aches, and he continues to eat about half the amount he usually does (I hope the ample festive chocolates will help maintain his weight, but he has lost a lot already). We can't go on as we are, it feels like an endless cycle of the same symptoms. Plus because of all of the GI problems, his body is having to work harder on less, which means his chest is bound to take a hit at some point.
We feel frustrated, and hopeful, and worried, and festive, and lucky and just about everything in between. But we are home, we have much to look forward to.
Happy Christmas all, especially the fabulous Jayne who is now HOME after 11 long weeks recovering from her double lung transplant, saving her from end stage CF. If you support the idea of organ donation, please use this time now with your families to tell them about your wishes should you die. An organ donation WILL NOT go ahead, regardless of whether you have signed up to donate, if your next of kin does not agree.
Have a wonderful holly-days x
* I've had a lot of questions about the CT scan. For this one, Isaac had to have a cannula, drink some Gastrograffin for contrast, and had contrast through the line during the scan. He lies on the bed, and the bed zips in and out of a ring doughnut shaped scanner. It takes just seconds, and gives the doctors a detailed cross sectional image of his abdomen (as opposed to an X-ray which is a flat image). It a fairly hefty dose of radiation, so they have to avoid frequent use. A CT is different from an MRI which uses magnets, in a huge enclosed scanner. A CT is a lot less claustrophobic.
