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
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So pleased to read this Sue. Did you see the news article this week about Peak District Mountain Rescue training on an aircraft crash. It's an exercise called Peak Diamond.
The medical director for that training is also a CCU Dr at CRH. I'm very proud of her!
Bloody marvellous to read your posts. I love the waving and cheering from the neighbours. Where you are now and where you've been is like heaven and hell. It's great that you can both re visit the community centre. Id love to be a fly on the wall! ❤️
oh Sue I look every day to check for a post and this has me in tears. After all these months of ups and downs with days of despair and then signs of hope you are getting your old lives back. I see the feeding tube has gone too, oh joy. How’s the muscle strength going? Only the trachy left and I am sure that will go eventually. Enjoy your Sunday lunch both of you x
Not sure about the trachy as his vocal cords only open half way so if he had a cold he could find it hard to breathe. We know they could put a trachy back in, but it could cause more damage and end up not being able to eat and drink again.However there's no rush and if it takes years it takes years. Xx
So pleased to read of Ralph's continuing progress. It just goes to show you should never give up hope (not that either of you ever did) The lows are getting further in the past now and you are creating new highs. Love & hugs to you both xx
That's wonderful and I don't know where they get there silly ideas from. They wanted to put my husband in nursing home too. Over my dead body is the response they got.
Same here, I just looked at them and said "not happening" and said we didn't care how many papers we had to sign he was coming home. As he has mental capacity they said it wouldn't happen as they can't kidnap people, lol
That's good my husband lost executive thinking and his speech is extremely limited but in our own way wel still have a conversation and no they can't kidnap them. But saying that I am wondering if me and you should apply for medical power of Attorney. Incase God forbid they lose mentally capacity we can legally step in. A friend of mine as done this for herself so her sisters can step in.
We're thinking of getting my elder son to be power of attorney for medical and financial if needed. I did it for my parents 20 years before it was needed
More good news You two are a inspiration to us all as how never to give up I am so in awe of you both. I am betting Ralph will rid himself of that trach eventually what a strong couple you are
what a fantastic post . If I’m honest with you sue , when you posted your first post , I wasn’t very optimistic for Ralph but obviously didn’t want to say , but I’m absolutely thrilled at the progress he’s making . He’s one tough cookie I’ll give him that . Looking forward to seeing more of posts , as very inspirational to us all . God bless you both x
Hi Sue, I have been thinking about you and Ralph and wondering how you were getting on. That is wonderful news, Ralph is one determined man and with all the loving care you are giving him he has came on leaps and bounds since he came home, particularly with mobility. I am sure he will have progressed even more by the time you do your next update. Take care both of you Char xx
I'd love to see the critical care staff's faces when they see Ralph again. They are going to be astounded at how well he's done. Not sure I could live with a trachy for life but we're all different. He's determined enough to beat that too. What an amazing man but he couldn't have done any of it without your support.
You'd be surprised what you can do if there's no other choice. He can do everything now, even gardening if he can rest in-between. It's only the breathlessness that makes him need to rest. Not breathless because of the heart, but the trachy and airway. I'm having to step back and bite my lip so I don't baby him, lol
I have been thinking about you both and knew you would at some stage update us how things are going and I expected they would be going well and now seeing your update I can see that Ralph is doing fantastic !!!
I love he is able to eat again having meals together must be lovely for you both as well as people waving to him as he passes he has become quite famous in your Community and on here as he is a miracle and a shining example of when there looks like there is no hope that with strength and the love of a good partner and family things can change which I know will give hope to others going through similar
As for the trachy I agree if eventually it can be removed great if not then if you have followed Ralphs journey and everything he has been through then it really is not a big thing you have him back that is the most important thing after all you have both been through even though I have a feeling Ralph been Ralph will eventually manage to have it removed
He's determined to eventually get it out. We'll have at least one winter to see what happens if he gets a cold or worse.Once he can do 24 hours he'd have to go into hospital for a couple of days so they can monitor him capped for 24 hours there. Then he'd have to stay in another 24 at least to make sure he's okay.
I think for this winter I would feel safer to keep it in and then see how it goes but as I said if anyone will eventually get it out then it will be Ralph x
Hi Sue Im so pleased that things have continued to progress so well . I often think of you both and everything you both went through. Especially when I'm worried about little things such as my leg not healing yet and I think dont be silly think what ralph went though and he still here . A truly inspiring story .Best wishes to you both x
Don't worry I am seeing the nurse twice a week at the moment. The hole is slowly starting to close up it's only been 4 months 🤣 no sign of seeing the consultant and no cardio rehab yet just doing my own thing . Will get there in the end and definitely better than before the bypass so that's good . Look after yourself xxx
Hi Sue wonderful to hear you both are truly inspirational and someone in a position like yours will take great comfort from you both. I was reading how clare moseley wished Michael was still as she was collecting an award he had received yesterday we have a lot to be grateful for at least we still have our hubby's take care both of youxx
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