A Delicate Balance

Back in 2020 we came the closest we ever have to losing our gorgeous boy. Evidently covid was a bit too common, so my son opted for a dose of complicated pneumonia with a different bacterium instead.

Ironically, the most traumatic experience of our lives turned out to be one of the most positive, as it resulted in several long-standing issues being addressed. His palliative care consultant, who has been caring for him since he was a few weeks old, devised a symptom management plan to allow us and everyone involved in his care a clear plan to keep him in the best health possible.

Fast forward to 2023, and things have been in balance for so many months that we actually started to relax a bit. But like building a delicate sculpture or a house of cards, all it needs is one thing to slip slightly, and it threatens the stability of everything.

Since Brexit, there have been regular medication supply issues with one or more of the Dude’s extensive list of medications which he relies upon.

As strep A cases started to rise rapidly, it became increasingly difficult to obtain some antibiotics for children and you’ve guessed it, one of the medications already in short supply became impossible to source.

This medication is crucial to keep our son’s gut moving; a simple action, but one with enormous impact. Gut dysfunction means lower medication absorption, so his seizures become more difficult to manage. Constipation adds to this, plus causing discomfort (another seizure trigger), delayed stomach emptying leads to bloating and vomiting, leading to increased risk of aspiration and a dangerous cycle starts to develop.

His team have worked with us to try and work round this issue with alternative formulations but to no avail – the inevitably hospital admission due to seizures finally hit.

It has taken several months but we think we have finally found a combination of medications that works for him.

His seizures are back under control again, however the recent issues have left a mark. Our boy has had more hospital admissions in the past 3 months than he has had in the past 2 years; all at least partially the result of this one medicine supply issue.

Most of the public don’t realise how vulnerable children like mine actually are; they see the wheelchairs and other equipment and think they understand, but they don’t see the battles behind the scenes raging to keep our kids stable. For now, we are rebuilding our beautiful, delicate house of cards – and praying that the next time something changes we can keep it from collapsing entirely.