Three Weeks / Three Months

Today marked three whole weeks without a chest drain so far! Still counting..

Yesterday was exactly three months since his respiratory arrest at Little Nippers playgroup. We took him home for a few hours yesterday afternoon, this is the first time that he has been at home since that morning and it made us very emotional. Not only that but he took his first proper unaided steps across the lounge then continued to do so the rest of the afternoon and again this morning at Physio.

It's crazy to think that he is even allowed out of the hospital let alone on visits home after Easter weekend. We genuinely did not think we would be leaving the QMC hospital with him at all. We were put in touch with another family a few weeks back whose one year old little boy also had just been given the same diagnosis as Dylan with similar lungs (not quite as severe though) which is almost unheard of so they were keen to discuss it with us. Unfortunately this little boy did not make it, he contracted a similar bout of infections and passed away on Friday after going into cardiac arrest a few times so we are aware of just how lucky we really are..

We know Dylan's condition is very serious and unfortunately not every child with his diagnosis will make it. The cases we know of are few and far between and it seems to be very hit and miss as to who can fight not only this awful disease but the infections contracted from the weakened immune system that Chemotherapy causes.

There is a meeting taking place this Friday about Dylan's future care plan.. this meeting will include all the departments from the hospital that are caring for Dylan, the community teams and even somebody from Shelton Infant School will be attending to make sure they can cater for him come September which I think is just amazing that they are willing to do that for him. I spoke to the receptionist yesterday when I collected Bryce and they are very keen to have him attend and will do their utmost to meet his needs so that made me a bit tearful truthfully.

Small steps forward, fingers crossed!