X-ray today revealed his DIOS is back and worse than ever. He's actually been quite bright this week, but at clinic today looked pale and in pain. He did a fantastic job of talking about his symptoms, and when later looking at the films I felt so proud, as he was absolutely spot on. So none of this is good, but Isaac and I are both feeling positive. We were given the option to try another drug at home (the explosives) which we will do this weekend - will not be leaving the house for 3 days now, but much prefer that to staying in hospital again. We also have a plan B (the big guns) and a longer term plan too (troops on the ground).
He has had acute episodes of DIOS in the past, but nothing like this. This has been on/off, but never completely better, for months now. Enough pain. Enough nausea. Enough pain killers for my ten year old. We can beat this now!
Other news; he has lost a little weight (understandable) and his lung function was down, but he is growing well. We agreed the drop in LF could be tummy related (pretty hard to blow furiously into a machine for as long as you can when you don't feel great). We'll be back in clinic next week, so will worry about that then. I can't thank our CF team at Addenbrookes enough. They go above and beyond in my opinion, and I'll be eternally grateful to them.
So we are home with our arsenal of new drugs...(bringing his prescription list to a tidy 20). Bring it on he says! I honestly think my heart might pop out of my chest I feel so proud of him sometimes.
In other good news, Jayne has left the ICU 5 weeks after her double lung transplant, and is back on a normal ward. This makes me very very happy. BIG love to Jayne, Tim and Adam. I can only imagine how hard it has been, and I'm so excited for your new life Jayne.
Have a great day all x
