Ralph doing well and happy with progress. Last Tuesday SALT said leave cuff down for 24 hours from Thursday to Friday morning, and if that went well, leave it down all weekend unless he was in distress. Then the plan was to put in a fenestrated cuffless trachy this Wednesday coming. Best laid plans etc. Last Tuesday night the cuff on his trachy got a puncture and went down Tuesday night. So as he'd already done 24 hours by last Wednesday, ENT decided to bite the bullet and put in the fenestrated cuffless one wednesday afternoon a whole week early. He's been fine although says it takes getting used to breathing through nose and mouth again as well as neck breathing.Here's where it gets interesting. ENT said before he comes home they're going to try capping the trachy which means covering it up and breathing alone. Says that can take a few weeks but once he can have it capped for 72 hours he could have it out altogether. Still may not be able to eat or drink though.
SALT came on Friday and was thrilled he'd got the new trachy. We said he may get it out before home and he said maybe not. He gave Ralph a teaspoon of water to drink, he didn't cough, but they had no idea if it went the right or wrong way. So either this Tues or the Tue after he'll give Ralph a swallow x-ray. They get him to swallow barium mixed with either water or yoghurt and take x-ray video where it's going. From my memory barium is a nightmare to swallow so think he'll find it hard. If it's going wrong way he won't recommend having trachy out even if not eating or drinking if he gets a cold etc his airway would be compromised. There are exercises he will give him to see if it improves. So obviously all those electric shocks he had haven't worked. So we're sort of on limbo until after the x-ray results. After that we'll start our trachy training ready for him coming home with one.
Obviously we'd prefer without, but we want him safe, he's worked so hard to survive.
SALT also said if nothing else works he'll refer him to Nottingham hospital for an outpatient appointment so the big guy can see if an operation would help, BUT we aren't sure about that. It was the intubation tube and sedation that started all this. We'll wait and see what happens in the next few weeks. The speed it's moving he could be home by end of July.
Best news of all, because it's cuffless and fenestrated ( holes in it) he can SPEAK, only on out breaths so takes a while but it's wonderful
It wore him out to start with but it's getting better each day.
If you're still here thanks for reading such a long post.
See you later 👋
xx
Update 
