Hi, must be a month since our last post, as Ralph is having his trachy changed again next Thursday and that's every 6 weeks He got the RIG out of his tummy 4 weeks ago, no problem at all. She came to the house and did it and thankfully took the loads of syringes back with her. They're all individually sealed so no problem. We dressed the stoma site for 4 days then left the dressing off. He had no leakage or problem from it whatsoever.
He started capping the trachy at home, found it difficult to do 2 minutes to start with, says it feels strange and really has to concentrate to breathe.
He's now up to 30 minutes a day, but still says it's hard first few minutes until he gets used to it, then it's easier. However he's only sitting watching TV while he does it. So on Wednesday he walked into the kitchen after his 30 minutes with the cap still on. Said he had to pull it off quickly in the kitchen as felt he couldn't breathe. Thursday he did the same and said it was okay walking into the kitchen. So slow progress.
We've talked a lot and he's obviously going to keep trying...you know how determined Ralph is.....but if he has the trachy for life as he is now, that's okay. We go out, he can eat and drink and his walking is amazing. He walked to our local shop with me the other day and had a chat with the staff while I shopped. It's only at the end of our street so they were all thrilled to chat with him. Theyve all shouted and waved for weeks as he's been walking.
Did I tell you we've been on buses as well? So basically back to normal apart from this flipping thing in his throat.
This coming Sunday elder son is picking us up and they're making us Sunday roast at their house. They live close to the hospital and the critical care staff have set up a meeting twice a month alternating Thu and Sunday to meet, catch up and have a cuppa and natter. It's at the community centre on my son's street, so we're going to pop in for an hour after lunch and see them. They were amazing with Ralph and even after he'd gone on the other ward, they kept popping in to see him and wheel him into the hospital garden for some fresh air and company.
So, all in all things are fantastic here. Remember when I didn't think he'd make it, or we wouldn't cope? Plus how they wanted him to live in a care home in Leeds! That was NEVER happening.
Keep watching this space, when I post in another month he may be up to an hour capping! If it takes 6 years or never happens, we're happy with how things are, considering how bad it's been.
So,if you're having a really rough time, I hope this encourages you to remember things can change for the better, hang in there and keep trying.
Plus all you caregivers, look after yourself ❤️
See you soon
Sue & Ralph xx
