Thursday 20 April 2023

Buggy

The bugs have got the best of us. We managed to draw out some time with intensive oral antibiotics, but in the end, they won the battle of the lungs. For now. Now we bring out the big guns. 

Isaac started IV abx yesterday. He lung function tests are pants, his symptoms, worse, his resilience and humour? As strong as ever. 

We were to be admitted to the ward, but they have no beds. This is both a blessing and a curse. Normally I would fight for home IVs with every cell in my body (his quality of life is paramount, and while hospital stays in adult care are so much easier than in over-stretched wards in paediatrics, it’s still difficult for us all, and we ultimately miss him terribly even when we visit all day every day). But this time? I suspected that the extra tests, vigilance and physio he would get on the ward would be more appropriate. Anyway, it is what it is. No doubt the hangover from Junior Dr and Nursing strikes have an impact. 

Having been witness to the amazing efforts of our nurses and junior doctors for 18 years now, despite this extra burden on us, we wholeheartedly support these strikes for not only fair pay, but for adequate support and working conditions for our amazing NHS staff. 

Isaac is on the drug cocktail (he always has two antibiotics at a time on IVs, and they vary that mix to try and tackle the bugs squatting in his lungs) that leaves him very tired. He coughs, he eats, he sleeps. And still, he is the best company ever. 

Have a great day x

Pictures; My two most gorgeous boys after a day of work; Anouk’s young love; and our Lottie (equine therapy is the best). 

Cystic Fibrosis is a life limiting, genetic condition, affecting some 10,000 people in the UK alone. CF sufferers often, as a last resort, need to trade in their damaged CF lungs for the lungs of a generous stranger. To sign up to support organ transplantation, please visit https://www.organdonation.nhs.uk/ and tell your loved ones of your wishes, as even when signed up, the decision becomes theirs after your death. Thank you.