Viva la vida.

The NTM (New Twattish Microbastard) cultures continues to grow in the lab. First signs hint that it is NOT the really nasty kind (Abscessus) - and by that I mean he is definitely growing another, not quite so mean NTM bacteria, but not ruling out that he may have the nasty one too. Still, it makes us feel hopeful. We are now two weeks into a six week wait for the second lavage (taken when he had his nose surgery) to confirm. We also have the results of the doughnut of truth (CT Scan) to come next week - which will reveal the extent of the damage from his most recent exacerbation, and any NTM disease; since these are in the Tuberculosis family, the lasting effects on the lungs are different from those his Pseudo infection inflicts. We're likely looking at two years of treatment either way, but the strain he has makes a difference to the kind of treatment that is (oral or IV's). 

He needed a cannula for the CT on Friday, and this took a few stabs (he is covered in bruises already). Unfortunately he has less and less viable veins left now - years of IV drugs and tests will do that. We're waiting to see the surgeon about a portacath. Although Isaac is still not keen, we need to start these conversations now and try and win him round. 

He continues to recover from his op, and is now back at school. He's also started twice weekly personal trainer sessions at a Crossfit gym - he has a way to go before he gets over the massive impact his infection caused, but it's just amazing watching him now, doing pull ups on a bar. Just a few weeks ago he was using a wheel chair, on oxygen, and struggling just to get out of bed. He is also finally off the steroids, the side effects of which we will not miss. 

Anouk and Rosa have spent the day starting to make the house look Christmassy (way to soon for a tree for us still) and dancing round the kitchen, and despite the anxiety around Isaac's test results, a cough that he seems to be brewing further, I am feeling confident of a Christmas at home. We know the New Year will bring more hospital stays anyway. 

I saw this at the Frida Kahlo house in Mexico City in August. The house blew me away - a life of pain, but so colourful and vivacious. She was described as 'living dying' after polio and breaking her back in a road accident when she was young. Her paintings often illustrated her pain, her childlessness, and her politics, but still she said, Viva La Vida - Live Life. I fell in love a little.