I wish I could tell you that all the news was good today, but his lung function was down again, and he’s still not right.
Normally at this point his IVs would continue for another week, and they would continue to review him every few days. Instead we get to go away on the proviso he swaps immediately to the strongest oral antibiotics he can take. Good news but they do make him super sensitive to the sun (he burns in winter on this shit) so I’ve been panic buying SPF50 rash vests. He will continue with his six daily nebulisers, increased physio, and if he gets any worse; we will come home early. If he remains the same (coughing lots and very productive, which is CF talk for bringing up lots of icky sputum) we call the minute we get back and head straight back in to hospital.
Our MDT (multi-disciplinary-team) values his quality of life as much as we do, and it’s forever a balancing act between this and treatment. They praised him today on how much he has been putting into staying as well as he can. He continues to complain very little, so how can we?
A cough-free, worry-free two weeks in the sun might not be possible, but we will definitely have as much fun as humanly possible.
Avec beaucoup d'amour x
PS. I’ve been asked to add for all those budding burglars, we have dog and house sitters in situ, but thanks for thinking of us 😘
