NGL (my teens latest acronym of choice).... the last couple of weeks have been tough.
Isaac refused to go into hospital, so we’ve been doing IVs at home. The doctors chose to pick their battles wisely and did not insist on him coming in. Any other time, we are the first to request, even beg for, home IVs and avoid an admission to the ward, allowing him a better quality of life. But this is the first time I’ve questioned it. To convince me, Isaac promised to commit to doing all his physio and nebulisers (all the daily treatments that he still needs to do) - but he hasn’t. We argue. I beg. He does a little better. He does a little worse. I collapse and crumple a little more.
His CF team tell me that they often see this playing out at his age, and he will learn. But while we wait, we risk his lungs becoming more and more damaged - much of which can be irreversible. He says he understand the risks and doesn’t care. I don’t know if either part of that sentence is really true. I show him that I care - is that not enough of a reason to try?
Today is day 14 - hospital review tomorrow to see if we can end IV’s. I’ve said I won’t do a third week at home unless he pulls his weight too. I’m exhausted, and tied to the house by five daily doses that only I can mix up and administer (he has thus far refused to be trained) and that we cannot be late for.
I’d never normally complain; we’ve always been in this together. But now, I feel alone in fighting for his health, and it’s a pretty crappy feeling. I’m like a pea without my pod. Sanctions are not working. I need him to try harder - and all the while, his headaches worsen now he’s off the steroids, and we know the next admission is looming for his sinus surgery (if we ever get a date) - so know the next hurdle is heading our way. We need him as well as he can be for anaesthesia.
My beautiful and talented friend kindly painted me this amazing portrait. Cannot tell you how much I love it! To see more of her incredible art, visit http://www.vollerthun.com/ - thank you so much Rachel ❤️
