Hi, saw SALT guy today. Ralph isn't going anywhere. He's been ringing round last 2 weeks and finally got to speak to the top woman in London. She says what he wants to do wouldn't work. Told him to work on getting the cuff down even if it takes a couple of months. The electric treatment didn't work, the movement they saw was a false vocal cord that sits up above the real ones. He said we'll all have to discuss how long to try as obviously he can't stay in hospital for ever. After he'd gone Ralph said 2 months. Even if he gets a non cuffed tracheotomy to come home with. He's not sure if he can come home with cuffed one, but I said they do from Royal Chelsea. We'd just need a little bit more equipment and support. He said after that it would be outpatient treatment and a few months after go to Nottingham as an outpatient for them to look and see if he'd benefit from an op on his something or other near vocal cords. Hopefully the cuff down will work well enough to do away with tracheotomy altogether as he really doesn't want another op and more intubation which could make it worse. He's going to try and get him an x-ray first on the swallow as that will show more than the camera scope he's already had. Also during the same time will be working on walking and strength.Starting his feed and meds through the RIG this evening so fingers crossed. He's in pain, but they're keeping him topped up with paracetamol.
Next day update : Hi, saw SALT guy... - British Heart Fou...
Next day update
Good to hear that there is a plan in place now. Xx
I don’t know what to say. Hopefully someone will come up with a better solution. I was hoping he’d be in his garden by now.
This sounds like common sense and care is being applied. Thank goodness the top lady in London has been found and they're following her guidance, and giving YOU guys a plan, going forwards. Something to KBO for, is so much easier. What possessed them to starve him for 5 days I'll never know, in terms of keeping his meds and strength up, but you're moving forward. You're both FAB. Thank you for sharing your hearts in this odyssey, with us all. It's a privilege to share all it with you, and we send our love and the BEST of wishes, day and night. You will get there. Both of you. 🙏🙏💞
Hi Sue Im pleased that they have been able to get him back on painkillers and feeding him again it must of been very stressful for you both. Its so hard that they cant give definite answers to everything but at least you have a sort of plan in place to get him home with you .I hope you have a positive weekend and get some rest xxx
Hi Sue, So glad that Ralph is getting sustenance and pain relief again. I really hope that the new plans soon see some results for you both. The strain must be completely draining for you. I sometimes think it is as bad or worse for the one who watches and waits for their loved one. I hope you can find the strength you need to carry on as you have already done so bravely. Lots of love Jan x
Oh my you have both been through so much. You are both still fighting together for Ralph's health. You have so much love and commitment to each other it really is inspiring. I hope with all my heart that things improve for you both in the near future.
A plan at last; not a perfect one but it does sound hopeful. He must be desperate to just get home and in his own bed. I really hope this is workable and at first they can get some food and pain relief into him. I hope you feel a bit better about it .
My heart goes out to you both and don't know really what to say. But hopefully Ralph can come home but make sure you get all the equipment and help you need . And please look after yourself.
Poor both - you seem tobe working your way through the entire medical mechanics and yet you keep your spirits up and your temper under control. Well done to you and Ralph.
let’s hope their plan works . You’re both going through such an awful time . Fingers crossed for you as always x
That sounds like better news Sue, still not where you and Ralph wanted to be at this stage but it's another step forward. Hopefully you both will be sitting in the garden in the summer even just for a few hours, and then come Xmas this will all be a distant memory, sending prayers and hugs 🤗 .
It has been and continues to be such an ordeal for you both.
I’m so sorry for Ralph, still being in this dire situation, dehydrated, unfed and without meds for so long has been another layer of torture.
And I’m so sorry for you having to witness this all and feeling so desperate.
It is so hard for you to stay positive and keep believing in a good outcome, but staying optimistic will keep Ralph fighting to get better. Keep your brave face on Sue and try to feel us all with you trying to give you support and courage. Xx
That's a little more promising Sue. You two are warriors and will get through this. Sending hugs Sue x
I feel for you both, I will keep praying for a good outcome.
The SALT guy sounds like he's really trying to find the best plan for Ralph, I'm glad he's there. Such a tough time, thinking of you and praying the feeds will go well. I daresay they'll need to take it slow. My dad had a stomach feeding tube, he had MND. He liked it to drip in slowly, using gravity like a drip, or if I used a syringe he wanted it very slow with breaks otherwise he felt too full, so I did a bit at a time over 20 minutes. I guess it makes sense because we might take half an hour to eat a meal, we don't gobble it all within a few minutes.
I hope today is a bit better than yesterday. ❤️
Sue looks like you're getting access to some better expertise. I can understand Ralph's reluctance to have more surgery after what happened. Best wishes to you both! Paul
At least there's a more positive plan in place and hopefully Ralph will get stronger and be able to manage what's next in this long running saga. Wishing you both (and your family) and the love in the world. Thank you for being strong enough to keep us all up to speed with Ralph's progress.
Lots of love and hugs. Jan xxxx
A long post 
