We got moved from Intensive Care to High Dependancy after Dylan's chest and bone xray, which is massive step!
Realistically we should be moving onto an Oncology ward soon but they are being cautious because of Dylan's lungs being a "ticking time bomb" and the ease of being able to put new chest drains in quickly without the need for theatre when on ICU or HDU.. which is understandable.
We were still supposed to be visiting Great Ormond Street on the 22nd and were going to get transferred down there from QMC.. however, they are short of parent accommodation so it looks like Dr Aurora and Dr Spencer may actually be travelling to us at the QMC which would be very helpful and save a lot of trouble, but either way we are just so grateful for their help!
Dr Bhatt from respiratory at QMC seems genuinely shocked by Dylan's recovery..
He kept telling us on Friday how Dylan would definitely need a transplant asap (whereas Oncology were saying no he wouldn't), but today he actually said 'maybe' in a few years! To hear this from him is very reassuring as he is definitely more negative and weary of Dylan's condition and his lungs capability. But, only time will tell how Chemotharapy helps the bullae consolidate and how quickly this happens. The healthy lung tissue will never return but eventually should stop 'bursting' as the cysts will become scar tissue, but, that could take years with how many he has. He can, however, grow healthy tissue around these as he grows now the process should have been stopped by the treatment.. how much and whether it will be enough healthy lung for when he is an adult though? ..Only time will tell...
Here is our little superhero in his cape from Tiny Superheroes (www.tinysuperheroes.com) as ordered by his Auntie Sami.. he really is super!!
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