Unsettled Days, Exhausted Nights: A week We Survived Together

As we continue to adjust to life at 'home', this week has for sure been the toughest. Eira has been incredibly unsettled, and has had to utilise her 'rescue' meds everyday, almost reaching the maximum. The reason for this unsettledness, nobody really knows, not even the professionals. It could be this, it could be that. The game of trial and error is being played, and Eira is the pawn. As the week drew on, it was decided that a medical review needed to be done, and for this, a trip to PACU (Glangwili Hospital). Would this be just for the afternoon, or would it be a stay for the foreseeable future? We were hoping for the first, but prepared for the latter. If it meant that Eira's unsettledness would be managed, we were prepared for anything.

Turns out, there was no clear diagnosis, her blood tests came back clear, all the other standard medical examinations came back clear, surely it must be neurological, but how do they prove it? how do they treat it? Nobody knows.

Fortunately, on this occasion our stay in hospital was a short one and we were discharged that same evening, with the capability of doing the same at home as they would have done in hospital, give the medication. With discussions between nurses and consultants, it was decided to add an additional medication to help with agitation, and unrest. This new medication would be similar to her 'rescue' meds, but longer lasting. We tried everything we could from a non medical point of view to try and alievate the unsettledness, even enjoying the sunshines and a stroll around the park didn't do the trick, something Eira has usually reacted well to.

As the professionals continue to discuss Eira, and try and identify ways to manage her symptoms, the weight of these days is heavier than we imagined. The hours crawl by as we juggle feeding, comforting, medications, and of course, Angharad too, all while wondering if things will ever settle. Every small cry feels like a fresh wave of worry, and the constant tension leaves us drained, our patience thin, our hearts desperate for a moment of calm.

If there's one thing I've learned in the haze of exhaustion, its that people need not be afraid to ask questions, to ask questions about the hard parts. It's better for us if people ask questions, rather than shy away, even if the answer is messy or uncomfortable. It's in those honest conversations, when someone dares to ask and we dare to answer truthfully, that we find tiny moments of relief and the reminder that we're not alone in this.

It's okay to ask if I'm okay, just know that even if I answer positively, I'm probably not.