Kris is now 3 months post surgery. We saw his surgeon yesterday and he is thrilled with his progress. Kris has mastered the art of swallowing and drinks all his Fortisip. He can swallow 2 bottles in under 2 minutes. He won't however try anything thicker despite my entreaties. He is doing some of the household chores and sweeping the Autumn leaves off the path. I think that by the time Summer is here he well regain the lawnmower. Oh yay!
Kris is managing his own tracheostomy cares, although we still do get flying sputum much to my consternation. It remains very quiet here though. He does use the speakit app on the iPad, but just as often we communicate with face and hand gestures. After 25 years of a noisy and loud household with 3 sons , to go to just me and the old dog who are vocal is decidedly odd. I miss Kris's voice terribly. Roll on November when the team will insert the speaking valve, although it will then take about 12 months for him to learn to talk using it.
Problems? Well Kris can not turn his neck so is unable to drive. He still needs lots of physiotherapy. He also has severe trismus and got the required lectures from both the SLT and Surgeon yesterday. Why is it that he wouldn't listen to me, but is now doing the mouth stretches? Some of his remaining teeth have recently fallen out so this is very important for ongoing dental and oral care.
The surgeon asked us if given this option again would we take it? Of course we would. Kris is living well and is improving daily. The alternative was no option. The surgeon agreed and said that this extensive surgery is not offered to all, only to those that they think will survive well.
We are surviving well. I try not to think too far ahead. All Kris's nodes were negative. There was PNI in one small nerve and that was taken out during the surgery. We were reassured that the surgery was extensive and everything in his oropharynx and neck was cut out , with reconstruction from his abdominal muscle.
I do not borrow grief from tomorrow.
Many thanks to everyone on this forum . I could not have got through this experience without your experiences and advice.
Tammy

So glad he's doing well! Will they be rebuilding his tongue at ll?

They rebuilt his tongue with a rectus abdominal flap. This is completely non functional and just fills the space in his mouth,It will never move or taste. Surprisingly he gets a hint of taste, but not much. Maybe from his nose, though no air passes through there.
Kris has a permanent tracheostomy with his airway opening on his neck. Absolutely no danger of aspirating!
Tammy

misskate has had the same surgery (tongue) and says there are tastebuds. Elsewhere in the mouth as she can taste still. If I had to rely on my nose for taste I'd be screwed my nose sucks!!! (or blows ) big time really - my sense of smell has never been good. Her surgery as far as I know doesn't include the trache though. I hope November comes soon for you - I imagine it will be a challenge to speak again but life always has challenges!

Best of luck he sounds like he's doing well!