Downgraded Again!

Yesterday was Bryce's birthday and in the morning we went to visit Dylan and Daddy at the hospital with his presents (and a present for Dylan) just as he had requested. It was lovely watching them together, Bryce kept letting Dylan open his presents and had taken him a party bag and a cupcake.

Despite having two 'working' chest drains in, Dylan's right lung was still deflated so shortly after myself and Bryce left at 12.30 they resited it and it started working much better!

Bryce's party was fab! He had a few no shows but there were plenty there and everybody seemed to have a good time. I had lots of help from family and I couldn't have stayed sane without them! Bryce got lots of lovely gifts and is very grateful to everybody.

Once arriving home and after Bryce had opened all his gifts from his friends, I was informed by Mike that Dylan had been moved onto the Oncology ward! This was the good news I had been waiting for all day as it officially meant he was over the worst of our ordeal and stable enough to begin a long term care routine.. Obviously he will have more pneumothorax and need chest drains putting in for a long time to come but they have a plan in place now that seems to be working so hopefully the risk of him crashing like he did before is minimal now.

Myself and Bryce went back to visit him today and take him some gifts people had dropped off for him, including some 'wiggly bags' for his Hickman line. The ward is absolutely lovely.. it's like a private hospital! Dylan's tv isn't working but they should be fixing it tomorrow so that's no major issue. He is getting a lot more care and attention now he is the correct place which is great. His right hand chest drain is still bubbling away a lot which shows there is clearly an ongoing leak, we know these can take weeks to heal, hopefully it will slow down soon.

Having two chest drains in really limits his mobility and he is pretty much confined to his bed which I think he found difficult at points watching the other children playing and racing up and down the corridor on ride-on cars. As much as I like the peace of mind I get knowing he has a working drain in each side, I wish he could get up and play and try to live as normal a life as possible... hopefully the pneumothorax will go soon and occur less frequently eventually...