Feeling Defeated

Yesterday the last remaining chest drain on the left was removed at lunch time. I was ecstatic to get it out and let Dylan play, and was excited that it had only taken 3 weeks to get to the point where it was safe for him to have none in as we previously anticipated months with them in. I told myself that even an hour without any in was a victory as we know a new cyst could burst at any point! He even got moved back around to the Oncology ward..

He lasted 16 hours before his breathing was a concern and an X-ray showed a new pnemothorax on the right hand side. Now the right hand side hasn't had any chest drains in since they "fell out" Tuesday night / Wednesday morning and he has been closely monitored since so this probably occurred overnight last night. The left side then followed suit and went again this afternoon..

So chest drain number 12 (I think) was put in the right hand side this morning by 11.45am and number 13 by 4pm and I can't help to feel a little bit defeated. It was so nice to be able to get Dylan out of bed, let him walk around, play and even use the potty without assistance. I know these are inevitable for now and that he needs them, but it's depressing. Hopefully it will eventually slow down in a few more weeks or months, but at the moment it's no quality of life for a 2 year old that should be off exploring to be stuck in a bed 24/7, I just feel so sorry for him!! Luckily he has been treated to LOTS of DVDs and activities he can do from in the hospital bed and hopefully Mummy and Daddy (and big Brother) cuddles help. And all this treatment and the chest drains are laying the foundations for him to hopefully be able to have a relatively normal life someday..

Whilst all this was going on I was actually at a Mothers Day lunch and craft session at Bryce's school so Daddy had to be in charge today! It was nice to spend some quality time with Bryce though and I just got back in time for a special delivery for Dylan..

This is Olly The Brave.. he is a special lion with a Hickman Line (just like Dylan) and a removable mane, and he comes with his own special story! This was given to Dylan by a charity called Molly Olly's Wishes set up by a family who sadly lost their daughter to Cancer, but wanted to help other children cope with their treatments and hair loss associated with chemotherapy. This charity also helps grants wishes to poorly children and the work they do is amazing! You can find their website at www.mollyolly.co.uk

Dylan is in a lot of discomfort from the new chest drains tonight but he still found time to do some puzzles...