Decision made.....we think..lol

[Gardenview10]

Hi all, been a while.Ralph has had 2 appointments to change his trachy so has to be over 12 weeks, maybe 18.

Appointment 12 weeks ago, the consultant wasn't available due to an emergency, so saw his 2nd in command. We know him well from when Ralph was an in patient. He asked if we'd thought about getting it out. Said we had, but obviously scared if he collapsed would they put another straight back in. He was very reassuring and said if that happened in the 24 hours after they would, but if he had breathed on his own for 24 hours it was unlikely to happen and he'd be fine. Said think about it for next visit.

Ralph was a lot happier and decided he'd try, as he's capping for around 14 hours a day.

So, last Thursday we saw the consultant and said he'd like to try, after what the other dr said.

He said think about it again, because Ralph's vocal cords are still paralyised and if after it's out he gets a bad cold or flu, there's a high chance he couldn't breathe and would need a big operation to fit another and his track record with intubation tubes and anaesthetic isn't good. He could end up back where he started, no speech, no eating or drinking and having another RIG fitted to inject fortisip for food, and also crushing all his meds to inject as well.

No brainer really, we have a decent quality of life now, we can go out, have meals out etc.

As long as it isn't too cold, in which case we stay home.

So, looks like we'll be telling them next time, it's staying in. They said whatever we decide is fine, they're happy to keep changing it every few weeks. It's entirely up to him if he wants to take the risk.

We decided it's too stressful to be scared every time someone sneezed near him etc, so looks like it's staying in.

He'll carry on with the capping in the day, as he's then breathing through his nose and mouth and that helps his lungs work better, plus his speech is stronger then as well.

Ralph says he could take the risk, but he'd constantly be worried and after the 6 months last year spent in hospital, he isn't sure he has another big fight left in him.

Sorry for the long winded post, just wanted to check in.

Thanks everyone for your support

See you next time

Sue and Ralph xx

[ETHEL103]

Lovely to hear your update Sue.Glad you've come to your decision and Ralph of course.Totally understandable after what you both went through.x

[AmandaLouise77]

Great to hear from you. Ralph (and you) are both so strong, great to hear that he's doing so well. You have to make the right decision for your circumstances and having quality of life, outings and family time is so important. Xx

[Plastow48]

Think you have made the correct choice. Quality of life is so important and being able to get out together is wonderful to hear. Take care.Jenny

[Callie456]

Lovely to hear from you, it's been such a long medical journey for you both. I admire your courage and how you have both come through to where you are today. It's great to know that you're able to get out and about, socialise with family and friends and enjoy quality time together. Capping all day is great and it sounds like a good option to keep it in given the risks the dr outlined. You don't want to be spending time feeling scared about if you get sick, you both deserve to just have lots of stress free fun!

Lots of love ❤️

[WoodlandLover]

I would make exactly the same decision as you both have done and for all the same reasons. Mammoth fights like Ralph has undergone and you've shared, can be done for as long as it takes in the beginning, but once you've finally reached a level of stability, looking at all the options, with inevitable likelihoods of colds and flu's to come in years ahead, I think you've done exactly the right thing!! You've got a blessed level of your lives back now, and a safety net to help with future bugs, which we all get, but which could be life threatening for Ralph without the safety net. And the prospect of more huge battles in hospital is literally overwhelming. Letting go of his current support, turns every day into a permanent anxiety, as he says, of dreading every sneeze, and that takes away your natural pleasure in every outing, and makes life fearful instead of happy We know ourselves. That's a wisdom born from experience. You're both rich in it. It's a wise and courageous decision and I applaud you both! Wishing you happy years and peaceful hearts, dear Sue and Ralph, and many Blessings! XX

[Gardenview10 in reply to WoodlandLover]

I must admit, I'm relieved. The last 2 months I've been a wreck, although hidden from Ralph. Anniversary of the op on 1st February, the weeks before he woke up and the massive fight has finally caught up with me. Ralph says I had it worse than him, he remembers nothing of the 10 weeks in CICU before they moved him to our local hospital. As I point out, I just visited daily he had the pain and the fight

[Greenthorn in reply to WoodlandLover]

Wonderfully summarised. Whatever Sue and Ralph decide we all stand alongside them.

[weepip]

So good to hear your update Sue. I think making a decision is sometimes so hard but once it's made the relief you feel makes you know it was the right choice . I'm so glad Ralph came home to you and that you get to enjoy your life together even if it is slightly different.

Take care x

[Digger0]

Lovely to hear your update Sue about Ralph. I was only thinking of you the other day! I think you have both made the correct decision as the trachy is not causing any problems, and as you say, you have a decent life - going out etc. Let's hope we have some decent weather this summer for you both (and everyone else) to enjoy! xxxx

[Thanksnhs]

Morning Sue, it's lovely to hear an update about you both. I am so glad to hear that you are both out and about for meals etc and your quality of life is good now. I am sure now that you have made the decision and you will be able to relax a bit more and enjoy your time together which you totally deserve after everything that happened to you. Take care Char xx

[Qualipop]

Lovely to hear from you a gain. A difficult but I think very wise decision. I agree there are just too many risks and he's coping well now. Give all our love t o miracle man.

[Cassiedogoman]

Thanks for the update , always good to hear about your progress. You sound like you have made an informed decision that suites you all and I wish you all the very best for your future ahead.

[BeKind28-]

Hello

Lovely to see you on here and an update

Not that it matters what I think but I am with you and Ralph on your decision seems the best one to me

He has come so far understandable that neither of you would want to take a gamble especially as thee quality of life you have is suiting you both which is lovely to read

Thank you for the update x

[Greenthorn]

Let's say this is your year Sue, with Spring and Summer to come. You both deserve a good run on life itself and I send you my very best wishes.

[BlueGreenPink]

thank you for the update Sue. Based on what you have said it sounds like you have arrived at the right decision. It’s all about quality of life and balance. Sending hugs to you both. Enjoy the improving weather. And well done for coming so far, you are an inspiration to us all x