View Full Version : Unbelievable!

04-21-2009, 04:12 PM
So Nadia's first MLB since trachy was scheduled for tomorrow and had been in the diary for the past 5 months. It had also been agreed that, if after the scope there was still no change in her vocal cords, they would carry out an MRI whilst she was still under G.A and a slot had been booked provisionally. Plus as you know I've been gearing myself up for this date for a long time!

So imagine how furious I was this afternoon when ENT rang and told me they had CANCELLED her scope as they didn't want to do the MRI and scope together and needed her to have the MRI first to determine whether her condition is due to brain defect. Only if the MRI was clear would they carry out a scope but obviously it would be on a different date!!!

Well, I felt quite sorry for the registrar I spoke to as he was obviously just the messenger and at the receiving end of my fury but come on....why turn round the day before the scope and tell me this. They've had 5 months to sort out a plan as we've always known she'd need an MRI. Do they have no idea what we go through as parents of children with a trachy??? Do they think it's a walk in the park?? I've been banging on abou when we can get MRI for months now and was the one at the beginning who felt it would be better to do MRI first but was then reassured by ENT that no, it was better to do scope first and then MRI.

I am sooooo mad and am definitely going to put in a formal complaint over this. It is completely disrespectful and unprofessional.

So now we still have to go to St Marys tomorrow for the MRI and then in again on Monday to see (supposedly) the surgeon who wants to discuss with us MRI scan results and next steps. I hope he's ready for us:mad:

04-21-2009, 04:22 PM
Hi Sarah,

So sorry to hear the MLB has been cancelled. If it helps, we've always had to have separate anaesthetics for MRI's and MLB, never combined them, but that may be as the MRI machine is in a different part of our hospital to the operating theatre. It could turn out for the best too, as they may see something on the MRI that provides extra info for when they actually do the next bronch.

Good luck, and yes, complain for definite.


04-21-2009, 04:25 PM
bloody hell. i would be beyond irritated too.

04-21-2009, 04:56 PM
Hello Sarah,
I can relate to how annoyed you feel. Sol's last bronchoscopy was cancelled twice. When it came to the third appointment, I did not believe it was going to happen. It did though and it was a waste of time as we don't know any more than we did before! It's very frustrating to wait and to then to be told you have to wait even more. Some doctors are more compassionate than others though but the waiting / postponing / not knowing is horrible.
take care,

04-22-2009, 07:54 AM
Hate them too, you get so geared up for MRI's etc - they are not just the standard xray... bronchs whatever - we all get postponed at some time or other. Keep on at your team to make it happen.
Regaards cherie