The operation goes well and Kian is taken to intensive care afterwards. He is on a ventilator, but we have been warned about this and by this stage we are unfazed by the banks of pumps and equipment. In truth, for the time being, we are happy for him to be asleep and comfortable.
After 5 punishing days Kian is transferred from intensive care to the specialist transplant ward and we settle in. Mum is sleeping by his bed, I am living (and working) from a hotel room nearby.
Kian’s condition improves a little and he even starts to eat real food (something he had not done for years). Unfortunately these things are never as simple as one would like and there are an awful lot of things that are unknown after this kind of surgery. Research in this area is difficult and you realise how much is taken for granted in adult medicine.
We have one more final upset to catch us out – back to theatre to fix a leak in the pipework from the kidney to the bladder. Expecting a minor operation, after 4 hours in theatre we are seriously worried – at that point we had no idea what was wrong. Afterwards we find out the urine had been leaking direct into his abdomen which was causing all the swelling and pain.
A further four weeks pass and Kian makes good progress. The ward has become our home and I have been working at the hotel when possible on a laptop. Some very kind friends of friends had been bringing us food parcels which where most welcome (they only feed the child on the ward and cooking facilities amount to a microwave, a bowl and a spoon; maybe a tin opener if you can find it).
Discharged with a new bag of medicine, we are genuinely nervous – it’s a big step for us and suddenly we are on our own again. But at least we are home!