Ralph is no worse than yesterday but looks like he'll be in another 3-6 months. Has paralysis of vocal chords... temporary hopefully... But can't have cuff down on tracheotomy because of it as secretions go into lungs instead of stomach. So not looking at it again for 6 weeks to see if swelling goes down and improves. They have said as soon as HDU medical Dr signs off he can go to a normal ward, however only a couple have trained staff for tracheotomy care and treatment on them, but otherwise he's okay. Then they can concentrate on getting him mobile while he waits for the other. It also means he'll have to keep being fed by Ng tube and can't eat or drink 😔
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Not so good news but its best in the long run I guess...hang in there xxx
At least they've got to the bottom of it and aren't continuing to make it worse by taking the cuff down.
Baby steps, some forward, some back. He's come a long way xx
I'm not really seeing it as a backwards step, apart from not coming home as soon as we'd like. I'm taking heart that they know what it is and they're happy to take it slowly and get it right x
Oh Ralph you can’t catch a break can you. Sue you really need to look after yourself to keep up the pace of visiting it takes it out of you without you realising when it’s months and not weeks. I am glad that Ralph is being kept in the same hospital to continue his care and pray he will get his vocals back soon xx
He's really okay, no different from yesterday. It's just putting off the date he comes home. I'm just pleased they're on top of it. I've arranged a 16 yo lad of a neighbour to come once a month with their petrol strimmer to cut back and front garden. I'm happy and he gets some spending money. His mum said he'll do it for free as neighbours helping out, but not on my watch, lol
Good for you, Nice to have good neighbours looking out for you. I hate those feeding tubes I hope it won’t be too long until Ralph can get rid of it.
Hi Sue Im sorry its not better news today but at least you are getting to find what the problem has been . I always find the not knowing one of the hardest things to deal with. Now you know the time frame for getting Ralph back home you can put things in place to make it easier to cope with(like getting the lad to cut the grass)The hopes and then disappointments are not easy to deal with. I hope you are taking time to look after yourself best wishes to you both xx
It's because of the mild stroke apparently. 99% recovered so could have been a LOT worse. x
Glad they have a strategy and at least you know it’s on for the long haul now Time to concentrate on his mobility - hopefully the better weather is with us now and Ralph can get outside some days - all good wishes to you both x
I don't know his current capabilities but he must be getting bored.
Does he have whatever is appropriate from a radio to a book, a tablet with tv and headphones to a board game etc.
He's got his tablet, and charger, lol. Got his kindle on that with 100's books, plus he can get BBC iPlayer on it, WiFi not good enough for a lot of other stuff, but he can play our word games so can also send messages to each other. Email doesn't connect, may be different in another ward.
Is he able to physically manipulate books? I would miss those, although kindles of course have their place.
I go onto online forums a fair bit on such things as climate and would miss the interaction of that. If he used to do something similar he might miss connecting with other people that share his interests.
I also like to listen to BBc sounds. So having a better wifi connection may or may not be important to him. If it is, there may be ways of boosting the signal
Not much room to store things in the tiny cupboard in hospital. Full of clothes and toiletries. Kindle on tablet more convenient and he's okay with that. When he moves to another ward the WiFi may be better. Where he is you're supposed to turn phones etc off but no-one does. Signal is better on the normal wards. Obviously not taking his phone in as he can't talk, but everything else he can do on his tablet
Hi sue I am glad to hear that they no exactly what is happening and how to deal with it.I had the same problem in hospital with the WiFi it was terrible in my room. I changed my phone package to unlimited data and used the mobile hotspot to connect it to my laptop, it worked for everything TV shows, email's, video calls etc. It was so much better than the hospital WiFi. Char
Do they know what caused these problems in the first place as that might help you to come to terms, but might also help other patients having the operation not to get in the same situation?
It was the stroke, 99% recovered, but affecting his vocal chords. They help with breathing as well as speaking. When they've tried him with the swallowing the chords are in the wrong place and it goes down the wrong way. They're hoping the swelling will go down and will look again in 6 weeks
Oh, that's not the news you wanted to hear. I hope things settle down and if he can go to a regular ward things may be a bit quieter at least. Hoping for steady improvements and that you remember to rest. It's a long time to be going back and forth to hospital. Take care ❤️
hang on in there sue , you e both been through so much x
At least they have found the cause of the lung infections - secretions going down the wrong way! Shame about the no eating or drinking - no nice cups of tea! When he is more mobile he will be able to get out into the grounds mote, for some sunshine. xxx
They give him drinks and a toothbrush and he dips it in the drink and brushes it round his mouth. The other day the nurse made him a cuppa, I thought his taste may be different, but his face was amazing, ecstatic, lol. Obviously can't swallow it, but he could taste it and it was obviously the best thing he'd ever had😜 Shame they can't liquidise a roast dinner and do the same 🤔😂. He's obsessed now with asking what I'm having for tea, told him to stop torturing himself, but he really wants to know x
What lovely nurses! Perhaps Ralph wants to imagine you sitting down and eating. xx
thinking of you both ❤️❤️
Sending my love to you both. Glad you have someone to cut your grass now too. I am sure he will appreciate the pocket money. Take care 🩷🌸
They at least seem to know what they are talking about but I can't get to grips with why some of this wasn't discovered at the other hospital. In saying that though, going back over what should have happened doesn't change what has happened and it's good to know that this team found the source and are actioning it. It sounds like a long stay in hospital but they will work on so many things with Ralph before he is allowed home to make sure he is strong enough to do that. Thoughts as always are with you both and thanks for the update when you have so many things to think about. Xx
I actually asked the consultant to make sure they won't send him home before he's "fixed" and they said absolutely not. Which, although we want him home, it's a big relief to know that.
He sounds like a good, caring consultant plus he won't want the good work they've been doing to be undone by a release that's too soon. Small steps but all positive ones. Xx
Oh dear love. Sorry to hear this is going to be a long stay in hospital for him. Its surely taking a toll on you with all the visiting and also your husband as well. Hope all goes well 🙏. Brian
Pleased there is a plan in place but what a long haul for both of you. It must be lonely for you at home on your own for so long without him, and the toll it must take on you travelling to see him. Remember to look after yourself too and be kind and gentle on yourself. Well done to both of you x
I haven’t made any comments yet but I can’t help thinking of the effect it’s having on your own well being. Naturally everything is about Ralph but you are having just as hard a time in your own way. Stay strong and fingers crossed for you both. 🥰
Sorry about Ralph but at least you know where you stand and they have a plan . I know how hard this is for both of you. But Ralph is being looked after and in the best place .
He must be very worried about you. I hope you are taking good care of yourself and spending time with family and friends and if you have hobbies doing them . And not spending every minute at the hospital . I know it's hard having the one you love away from you for so long. But you have to have a life as well. Self care isn't selfish it's a necessity for your own health and well being . I learnt through bitter experience what harm I did to my own health putting others first and it could have cost me my life.
I am not being over dramatic. After my husband died even though born disabled I had both parents and mother in law dependant on me. Mom was the last to die in 2017. Couple of weeks after her funeral my health got worse just thought a life of caring for others from when I was 11 had caught up with me and my body was telling me to rest. Then thought I had flu it's only when I go so ill I called my doctor in. I had jaundice but couldn't see I was yellow all over. It was caused by 2 tablets I had been taking since 1992. I was seriously ill for 5 months. First time I needed someone with me 24/7 and there was no one .
First time I had been frightened of being on my own since my husband died in 2004. Only when my gastrologist discharged me he told me people with my bilirubin levels normally died . It was the wake up call my life had to change and live the life my husband Nick wanted for me.
That's why I say you must look after yourself and do things you enjoy . Because I think if Ralph sees you looking healthy and happy it will help the both of you . I know it's hard to do. But I wouldn't want anyone to have the wake up call that life had to change the way I did.
All my best wishes to you both.
You must both be disappointed by the news of the predicted long stay in hospital. Each day is one closer towards coming home, hold on to that. Sending you all good wishes.
You are both in my thoughts and prayers x
Wow!!..is there no end to what Ralph has to go through??...hopefully he has no pain...did they explain what would have caused this paralysis ?..could it be from all the tubes..ventilator as well as cuff..?..yes..for you not easy either as you do each step with him...good that the neighbours are kind enough and they young man will cut your grass..as it is certainly growing now...I wish Ralph a speedier recovery..that his vocal chords heal..and that he will gwt to move around a bit...little things that will help him daily...and for you..I wish continued courage...and strength...all fingers and toes crossed for you both.
Your poor Ralph. Still battling on through this long war. It sounds as if his care is exemplary, so with that and his courage you will win this nightmare. It must have been encouraging for him to taste tea. That was a very kind nurse to make him a cuppa. I continue to pray for you both and hope recovery goes quicker than predicted and he goes from strength to strength.
It's a long haul for you both isnt it Sue. With any luck he'll be out in time to catch some summer in the garden.Keep your chin up, you're both warriors.
Best wishes Sue
That must be so disappointing for both of you yet a relief to know they won't discharge him until he's fully well. Now you look after yourself.
Oh my goodness you really are going through it aren't you!Ralph is in the right place though so at least that's a good thing
Do the medical team know what caused all of this in the first place?
He sounds like an incredible strong man!! Remember to look after yourself too. Baby steps all the way. At least it's going I'm the right direction.
As usual I got your post a day later than these lovely people on the forum.
There's a plan in place and the consultants and doctors know what the problems are so Ralph is in good hands. You've both been through so much.
Give Ralph a big hug from all of us when you next see him. If we could, we'd all give you a huge hug!! Make sure you look after yourself as it's easy to forget us partners need support.
Lots of love and hugs. Jan xxxx
Two Steps forward one back but at least they know what is and what caused it t's going to be a long haul for you both but he is in the best place to work towards a full recovery
Just spoken to his nurse, physio came this pm and he actually walked to the end of his bed space and back, about 30 steps. The most he's done is 4 each way from bed to chair and back, so we're all thrilled with that. He's going to work on his mobility while he's waiting for tracheotomy to be sorted
that's great He will be walking around the ward soon His strength is coming back always a good sign his body is recovering
like others, I am really pleased that there is a plan and that they are focused on the right things. 4 to 30 steps is amazing. Ralph’s in the best place and it sounds like he is getting great care.
Look after yourself Sue. X
Hi..I can sympathise with your husband..I now have one vocal chord completely paralysed, from a non heart related issue 13 years ago..I wish him all the very best, and a good recovery 🙂
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