Hi all, been a while.Ralph has had 2 appointments to change his trachy so has to be over 12 weeks, maybe 18.
Appointment 12 weeks ago, the consultant wasn't available due to an emergency, so saw his 2nd in command. We know him well from when Ralph was an in patient. He asked if we'd thought about getting it out. Said we had, but obviously scared if he collapsed would they put another straight back in. He was very reassuring and said if that happened in the 24 hours after they would, but if he had breathed on his own for 24 hours it was unlikely to happen and he'd be fine. Said think about it for next visit.
Ralph was a lot happier and decided he'd try, as he's capping for around 14 hours a day.
So, last Thursday we saw the consultant and said he'd like to try, after what the other dr said.
He said think about it again, because Ralph's vocal cords are still paralyised and if after it's out he gets a bad cold or flu, there's a high chance he couldn't breathe and would need a big operation to fit another and his track record with intubation tubes and anaesthetic isn't good. He could end up back where he started, no speech, no eating or drinking and having another RIG fitted to inject fortisip for food, and also crushing all his meds to inject as well.
No brainer really, we have a decent quality of life now, we can go out, have meals out etc.
As long as it isn't too cold, in which case we stay home.
So, looks like we'll be telling them next time, it's staying in. They said whatever we decide is fine, they're happy to keep changing it every few weeks. It's entirely up to him if he wants to take the risk.
We decided it's too stressful to be scared every time someone sneezed near him etc, so looks like it's staying in.
He'll carry on with the capping in the day, as he's then breathing through his nose and mouth and that helps his lungs work better, plus his speech is stronger then as well.
Ralph says he could take the risk, but he'd constantly be worried and after the 6 months last year spent in hospital, he isn't sure he has another big fight left in him.
Sorry for the long winded post, just wanted to check in.
Thanks everyone for your support
See you next time
Sue and Ralph xx