Ralph is doing okay, walking with a stick now, and managing 8 stairs. Showering himself, front anyway, can't do back or bottom as having physio on his shoulders due to them being tight through lack of use. He can also dress himself. He's still not allowed to get out of bed or walk without supervision in case he falls.
Big meeting with everyone one day next week, making a big plan to see what needs to be done to get him home in a couple of months.
They were saying he'd have to go to a nursing home in Leeds to live, for tracheostomy care. We said ABSOLUTELY NOT, he's coming home, and we'll sign any paperwork to take responsibility for that.
Still working on getting the cuff down so he can have different trachy. Work in progress that may or may not work
He's now on bottled feed which we syringe into his rig and then flush with sterile water so it doesn't clog.
Although apprehensive and scared a bit, a lot happier that they're planning for him coming home.
I said to Ralph what happens if after a couple of months at home something happens and we can't get help in time and you die. He shrugged and wrote then I die, but it'll be at home and I'm happy with that risk
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It’s lovely to hear from you again Sue. I’m sure others will be very happy to see your post. You were very much missed by all.
It sounds like Ralph has made some progress since your last update. Fingers crossed for being able to take him home at some point when it’s deemed safe by the doctors!
I hope you are looking after yourself and thank you for updating all of us. Hopefully, you are spending the weekend relaxing and enjoying some of this warm weather we are having.
That definitely sounds like a nice way to spend the weekend.
I hope you had the break you needed away from the forum, as I do miss your updates. I missed what happened on your last post, however, it is quite common for people to disagree or have opposing opinions on online communities. Though I appreciate it doesn’t help you when you are currently trying to navigate Ralph’s care and treatment plan with his doctors.
Sometimes it’s easier to take a break for a while instead of permanently deleting your profile. There are lots of people here who would also happily receive private messages from you if you needed support and did not want to post on the main forum, me being one of them.
I've never been much of a gardener but the garden was a lifesaver for me. It gave me something else to concentrate on. It still does. I hope it does the same for you too. It is so important to take time out for yourself. Sending positive thoughts to you both.
Sue, so happy to see you here again and have an update on Ralph. We have all missed you terribly. Sounds like a plan is being put together. Well done on Ralph for managing the stairs and using a stick! Give him a "well done " from an ex-physio xxx
lovely to hear from you Sue. You were certainly missed. And Ralph seems to be getting stronger physically and mentally. Tell Ralph we are all asking for him when you visit today. And enjoy the sun tomorrow- you so deserve it ☀️
So good to see you back Sue so pleased that things seem to be progressing in the right direction for ralph and that he is getting so mobile . I think you are both adults and are more than able to make the decision that is right for the two of you. I hope you have a good weekend and some quiet time x
Yes, 2 governors of the hospital came round yesterday asking how was the experience in the hospital. Told them about signing to bring him home when he's ready, they agreed and said stick to your guns, it's your choice, not theirs.
Thank you for coming back and for letting us know the latest.
Now you’ve got a tentative plan and timescale to get Ralph home it gives you both (and the hospital) something to work towards, mentally and physically, rather than remaining in the limbo of indefinites and uncertains.
Wishing you and him the very best, you deserve it.
I'm so happy for you.I know it's a long road yet and it's all going to be a bit new and a bit scary but you are getting there.
I assume they will arrange people to come in to help with the tracheotomy care and ask for any training any of you need to feel more confident with doing the practical care at home.
I can completely understand that after all this time you want Ralph home rather than him going to a care home.
Yes. It will have it's ups and downs , and you will need to ask for a lot of help from everyone to do it or you will just get too pooped yourself but as long as you feel you can cope it will be worth it.
I'm sure that Ralph will improve even quicker because although he might not have as much equipment about he will be in his own surroundings and that mental health boost of being at home could help him get better quicker.
Get as much help as you can to get your house ready.
Push for a home assessment and any equipment like beds etc that will help you and keep him comfortable.
You obviously need to sleep separately for both his comfort and your rest.
Not sure if he will need home oxygen.
If he does, don't panic about that it's really easy.
They have to come and check where it will be and if you have smoke alarms in the right places.
If you need more the fire service will come out as part of the home services to put them up for free.
Then they deliver it whenever you ring and put it where it's needed.
You get phone calls to check all is well or home visits from the respiratory nurses.
The guys that deliver are really nice and patient and can also answer questions and remind you of how to do things.
I have supplemental oxygen so I can say it ended up being a lot less scary than I imagined.
The same is true with deliveries of food supplies.
If you need any advise getting through the minefield of sorting out home services , ask if the hospital has a counsellor that helps with getting you all the info you need about getting resources and benefits.
This person is often different to the Social Services or Discharge person that you see in meetings.
Often , they are independent, or separately funded and they are usually really good to talk to about your own feelings and worries as well as being willing to sit with you help you work out if there are things that you are entitled to which the Unit may not have mentioned.
They also help you with the paperwork and can sit in with you on meetings as an advocate.
Otherwise, the BHF helpline could give you some advice or know service numbers that would be helpful.
If you ever want a chat , or need something looking up send me a private message and I will help if I can.
If you just press the little avatar on my reply you get on my profile page and there is a message tab there.
Everything is looking very positive I'm so happy for you both, and so relieved that you've come back , big hugs , Bee
He won't need oxygen, he's only hooked eto it as humidifier for his trachy so will have nebulisers instead. Ralph and I are both going to be trained on trachy and syringing his feed and water afterwards to make sure he's hydrated and line doesn't get blocked. Ralph did his first syringe feeds yesterday and he did the last one of the day. All equipment will be provided free and be on prescription for free and delivered as needed. They will also have community nurses on standby. He'll be okay in our bed we bought a back rest and extra pillows to prop up. Our room will look like a medical room, but don't care.
When everything is decided and we have delivery of everything, I'll then have to taxi to the hospital so they can train us on those machines as they're slightly different to the hospital ones. All supposed to be portable so we could go out if we want to.....that's definitely not going to be for a while, lol
Oh great , all moving smoothly.I'd still suggest you might want separate beds for a little while though , if you weren't already planning this.
Just a tip from experience, for myself and others, it can make a big difference to how well you can sleep or how comfortable Ralph is in the first month.
He will definitely feel like he needs to move and reposition quite a bit to help breathing.
It's a lot of trial and error, and some sleepless, cranky nights when you first get home and get used to not being in a hospital bed.
You want lots of cuddles but then you also want physical space at night , I'm sure my hubby still has a few bruises from me trying to get him to push off and sleep in the spare room!😆😆😆
I don't comment on your posts very often but read the updates all the time. I am so happy for you both that things are coming together and that you will hopefully be back together again soon. I would be exactly the same as you and would rather compromise on a little bit of sleep to make sure my husband was safe and more importantly to be near each other. Good luck with everything and keep updating us even when he is back home
Oh my word, you have proper plans. That must make you both so much more hopeful. As long as you have an emergency contact to give you confidence, I Just know you'll be fine. I've never known two such determined people. Ralph's so lucky to have you fighting for him.
So many of us were worried for you both when you disappeared. Thank you for returning and updating us with an encouraging and positive post on Ralph's progress.
So pleased to hear the news - more forward steps. I had my husband at home after his severe stroke and the first week is rather scary but you'll both be so delighted to be together properly and Ralph will make huge improvements beause he'll be more relaxed. So will you!
Strange but lovely to be 'hugged' by so many people who've never met you! Add mine. xx
that’s good news that your back on a happier note. My first reply to your posts but I have followed your journey in admiration. Good luck to you and your husband.
I saw a man on TV who had a tracheotomy that had something attached so he could speak artificially. He was on that Yorkshire antiques programme and it seemed to work really well.
It’s just dawned on me Sue that I used to have neighbour who had a tracheotomy in permanently after being involved in a major car accident. She also lost her son to the accident. However, she lived a long time despite having the tracheotomy in, somewhere around another 15-20 years, eventually gaining her ability to talk and eat solid foods. Her voice was always quite hoarse because of the tracheotomy, but we could definitely understand her. Her family were able to manage her care needs at home.
So with the right help, it is definitely possible that Ralph may find himself in a similar position!
My husband lost his speech with his stroke and we developed, somehow, a method of communicating very successfully. At that stage we'd been together for 25 years so 'knew' what the other was thinking and that helped. Friends suggested we could become the new MI6 spy category candidates because no-one else would know what on earth we were talking about. A glance accomplishes masses. xx
So pleased you are back and that Ralph is improving He has the right attitude about being at home and if things go wrong so be it He's at home with you and that's the perfect place to be
Thank goodness you're back Sue. Ralph will be much better off at home with you (how dare they suggest a nursing home!). He's made so much progress since I read your last post. Take some time out for yourself and give Ralph a big hug from us. You're both so brave and awesome.
Hi Sue, great news to hear that Ralph maybe home in a couple of months due to his improvements & and determination. You must be so relieved. I can't imagine the stress all this has put on you, hopefully now all will go to plan & he'll be home where he belongs. In the meantime, enjoy the sunshine & the Potter in your garden. Thanks so much for the update, as the other lovely people have said, you're in our thoughts 🥰 xx
a lovely way to start my Sunday. Same pattern, brought Dad home rather than let him go into a halfway house for care. Mum and I took the training for his feeding tube (which she did in her mid 70s I was just the back up plan) and he stayed on it for 5 months until a wonderful consultant overrode SALT and made a leap of faith to let him eat.
Home is the target for us all. Mum did have a couple of mad dashes to A&E over the next years but he lived his life to the full if not in quite the way he hoped.
So go for it. We’re all pleased to hear from you. Turning point starts now. Xx
So glad to hear from you Sue! Sounds like Ralph is coming on leaps and bounds now! Don't be too apprehensive about the RIG , Trachy etc at home. Specialist nurses will help you and so will the District Nurses ..of which I was one! It's amazing how spouses learn to handle the necessary equipment etc ..and become experts! Onwards and homewards!! Best place for him ☺️
A "shrug" from Ralph must be such a comfort for you! It's like him saying "whatever, You're here, I'm home, no problem". What a guy! Good to see you back. 🌱
Hi Sue....as everyone has said...great to see your posts again and good to hear that Ralph is getting stronger and can do things for himself a little more. I'm sure as you have done so far, that you will remain strong for each other and that everything will be put in place for Ralph's return home. It's obviously going to be massive changes ahead and as a couple you have had so much to deal with but you will both be happier when he's home so let's hope now that everything keeps moving in the right direction for that to happen. You are both inspirational xxx
So good to hear from you welcome back. Everything sounds more positive and Ralph is doing well. Good for you standing your ground about the nursing home, surely they can provide support once he’s home ? I know you both feel apprehensive and fully understand why but you have been through so much together I know you will cope and do your best. Sending ❤️🤗 and strength to you both. Don’t forget to take care of yourself 😊🌞X
As regards Humidity you mention upthread, is this a very local thing to do with his breathing/trachy or would Ralph generally be more comfortable if the humidity levels in your house were lower?
Here in the South West, close to the Coast, Humidity is very often 90/100%RH outside and indoors it can easily be 60/70%. I have written before about how high humidity has a big impact on breathing for heart patients. We have just come back from a week in the mountains of Switzerland where the RH was around 43% and breathing was much easier (after getting used to the altitude). The mountain village we went to used to be world famous for its sanatorium to cater for TB patients.
If the humidity is a factor there are numerous dehumidifiers that can be obtained, although you might like to take some readings in your home first. Hygrometers can be readily bought online for around £15.
If this is a factor it would be very interesting to know the RH in Ralph's hospital room.
Things sound like they're improving a little bit at a time. Ralph is amazing in his perseverance and I truly admire your determination through all this.Though doing medical things yourself at home can seem daunting, once you receive training and understand what needs to be done, you will be an expert before you know it.
We usually don't know what we're capable of until we have to face it. That's how it was with my parents. I ended up being very confident with all sorts of medical things, it was like hospital at home sometimes, I was dr and nurse all in one and I was good at it. I'm very sure you will be too!
Sue so glad to hear about Ralph's progress. Fingers crossed he carries on the same way. Yes home is best Ralph knows what he wants for you both. He sounds like my Nick both strong willed but if they are to die then it's to be at home. Nick died with me and the children like he wanted . Nick had fought cancer for 3 years but he did what he wanted and got to his 47th birthday he died 4 days later. He said once he stopped breathing not to bring him back. And we told him we wouldn't.
I hope once home you have some quality time together no matter how long that is.
So glad you are back Sue, and with such good news. All the prayers have worked. I will keep both you and Ralph in my thoughts and look forward to the day that you post when he is home x
What wonderful news and I hope Ralph will be home soon. So many ups and downs. How are you please take care of yourself too. Prayers and hugs. Jenny 🙏🎉🌈
It’s so lovely to hear progress, the next step, home. Well done both of you as you stay strong, but there can be nothing more satisfying than to be at home with the one(s) you love ❤️
Hi Sue really glad you are back I was worried something had happened but it's great to hear the progress that Ralph has made. You must feel so proud of his achievements, being able to get up and move about and able to do the feeding syringe. It's great that everything is getting put into place for his return home, you must be so pleased that at last he will be back by your side. Char x
Ahhh Sue! I'm so relieved you're back. It felt like losing a friend and I really hoped you'd return. Ralph is astonishing and so are you. Both your determination is moving mountains. Take all the help they can supply and maybe in the early days, a little extra with cleaning, and meals for you? You might not feel like cooking properly for yourself always but you'll need to keep your strength up Girl 💪 🤗 This is all great news. Ralph is progressing so determinedly and so well and I think he will go on doing it. Prayers for you both always, and bear hugs 🫂 🤗 🐻 🐻❄
Hu Sue sending you big hugs, I was given that kind of news, but June marks 3 years on although our life is different now and I am hubby's full-time carer, hes still with me. And my hope and prays is you and Ralph still have a long time together, from a legal prospective the hospital has to give you worse case scenario. But its often not the case.
so glad you’ve posted and I do hope everything gets sorted for Ralph to come home.
I know when my mum was coming home after major bowel surgery they were making sure she had the house fitted out with any equipment she needed, care through the night and day until she got back on her feet.
I do hope all works out well for both of you. Please keep us all posted. We do sincerely care.
Very happy that you are back ..we have all been very worried about you both..but it seems you are heading for a new phase in Ralph's recovery..it will be a relief to be home for him..and for you having him there will make you busier but happier...you both are taking on a big task..but thankfully you made the decision that is best and most comfortable for both of you...I wish you both strength and patience...you already have the love and dedication to each other....all the best wishes to you both..
Thank you Sue, I hope you don't mind me using your name? It's so good to hear from you. Ralph is progressing it seems I will keep praying for the two of you, stay strong.
Thank you for your update. I know it must be difficult when you have so much going on. It sounds like things are moving in the right direction. I hope you and Ralph find the strength together to fight for the outcome you want. Like everyone on this community my thoughts are with you. Take care x
Hello Sue, I don't really visit this site as often as I should, due to lack of time, so I haven't seen any of your posts. I have just managed to catch up with your previous post and I can see that you have had a tough and challenging time. I hope that all goes well with you and Ralph, and look forward to hearing from you again soon. Take care and stay strong xx
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so pleased that things seem to be progressing in the right direction for ralph and that he is getting so mobile . I think you are both adults and are more than able to make the decision that is right for the two of you. I hope you have a good weekend and some quiet time x
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