He was supposed to have his tonsils removed last week but the operation was cancelled last minute. We had a really awful time at Addenbrookes and have since lodged a formal complaint in the hope of improving things for other families in the future. In a nutshell, they weren't prepared for a child of William's complexity on the ward when we arrived.
I have now spoke to William's fantastic consultant at Hinchingbrooke and discussed our options with her. Having the surgery at Hinchingbrooke isn't an option because there is no PICU and they don't have specialist paediatric anaesthetists. Due to William's complications he is high risk for anaesthetic so needs these specialist services on hand.
We have discussed a referral to another hospital, particularly Great Ormond Street. She is happy to refer us but has explained this will come with it's own difficulties. We would have a longer wait as we'd be starting the process all over again, none of the drs there know William and if he were to need an intensive care stay it would be very tricky being far from home, away from any dr that knows his case.
Our current plan of action is to try and speak to William's respiratory consultant at Addenbrookes. He knows William well, is lovely and is also a PICU consultant. Between us we want to establish whether we think it's worth still pushing forward with the surgery or whether we should take a step back and look at some things first. In a child like William the tonsils would usually be removed if the child was struggling with sleep apnoeas. While we know William has apnoeas we don't know how bad they are. We might therefore look at carrying out a sleep study first at Addenbrookes to determine how much of a problem these are. This could lead us to the decision that the surgery isn't worth the risk if the sleep apnoeas aren't too severe.
We also want to speak to this consultant to see whether he can have more of a role in preparing the hospital for William if we proceed with surgery. This could involve speaking to the surgeon and anaesthetist before surgery and ensuring William has a bed on arrival while waiting for his surgery. Until we've heard from him we're not sure what the next step will be.
While we are so reluctant to return to Addenbrookes after last week's debacle, it would be the best place for William to be if something were to go wrong as he is known to a couple of drs there, they are familiar with our usual consultant and we are close to the hospice. I would also hope it would be the shortest wait for surgery given our other options.
Thank you to everyone who has sent lovely messages, dropped by with gifts to cheer us up and prayed for us. It has really meant a lot to us. In the mean time, William is thankfully completely unaware of all the worry and stress and enjoying still having his tonsils!
No comments:
Post a Comment