Quick update

Lung function - down, but not abysmal. 

Anti-fungal drugs - underway. 

Tummy - unforgiving.

Plan? - transition to adult care and make a new plan. 

Next post will likely be an epic ode to our amazing paediatric team, many of whom who have been with us all sixteen years.  We are going to miss them immensely, but also know, it is time to move on (sob!). First appointment this week, including tests 8am-5pm, including chest X-ray, CT, glucose testing, lung function, bloods....the lot. Long day, but looking forward to seeing the brand spanking new hospital that will become our new home from home x 

PS. And wow, just re-read a post from five years ago, pre-portacath (read here). If anyone is needing but doubting getting a port, we can only say that it’s been miraculous for us. Isaac has so few viable veins for access now, and the ease of starting IVs quickly and easily, is such a huge relief. 

November

Quotes from me on the CF Trust website..... I cannot tell you how much the Trust do to support us and the CF Community. Read more about gene therapy progress here. Talking of the Trust, the annual festive raffle that we organise at my work is underway, thanks, as always, to my amazing colleagues - and it feels so good to be fundraising again after the break that the pandemic has enforced.

Isaac is... much the same. Not great, and fighting the battle he wants to fight right now. He is not improving on oral abx (Cipro) although his pseudoA infection should be sensitive to this drug. He wants to delay IV’s (I get this) and try anti fungals first (I get this too, but worry that we are delaying action and this might be causing long term damage). He has a point, since his last exacerbation saw him only better after the anti-fungals (and steroids), but the typical path would be to try IV’s first, to treat the bacterial infection we know he has. Anyway, CF team have agreed to a blood test to see his infection markers for Aspergillus (his fungal infection) first, to see if that might be the best path. It’s good that he is wanting to participate in these decisions about his care, but also, bang-head-on-wall-with-worry-frustrating at times. Hopefully we will have a plan by tomorrow. 

Thank you for reading x x x